Originally Denied by the EPA, the Federal Government Now Acknowledges the Link between Ground Zero Air and Cancer

Two weeks ago, New York City held the 11^th annual name-reading ceremony for the victims who died in the collapse of the towers on September 11, 2001. Missing from the ceremony, however, were the names of victims who died years after the attacks.  Since 9/11, a multitude of ground zero workers, first responders, and inhabitants of Lower Manhattan have been diagnosed with a variety of diseases, including cancer and mesothelioma, believed due, and now presumed to be due, to exposure to toxic dust. Some have died from their illness, some survived, and some are yet to be diagnosed.

On 9/11, people from all over the nation rushed to New York City to help with search and rescue.  After the search and rescue mission ended, workers were hired to clean up and dispose of the rubble. Since the twin towers were constructed during the 1970s, there was an obvious concern that asbestos used to insulate the buildings, not banned at the time of construction, would pose major health and air quality concerns.

Former New Jersey Governor Christine Todd Whitman and then administrative head of the EPA assured the public that there was no need for alarm.  After reviewing scientific data, Whitman issued a statement on September 18, 2001 declaring the area safe for workers and nearby inhabitants. In a press release, EPA Administrator Whitman stated,

“‘We are very encouraged that the results from our monitoring of air-quality and drinking-water conditions in both New York and near the Pentagon show that the public in these areas is not being exposed to excessive levels of asbestos or other harmful substances,’ [...] ‘Given the scope of the tragedy from last week, I am glad to reassure the people of New York . . . that their air is safe to breathe and the water is safe to drink.’”

The credibility of this data was later called into question. In 2006, senior EPA scientist Dr. Cate Jenkins addressed a letter to members of the New York Congressional delegation stating,

“[T]est reports in 2002 and 2003 distorted the alkalinity, or pH level, of the dust released when the twin towers collapsed, downplaying its danger. [...] The test results helped the E.P.A. avoid legal liability. [... and] had a costly health effect, contributing ‘to emergency personnel and citizens not taking adequate precautions to prevent exposures.’”

During a June 2007 Congressional hearing, former Governor Whitman received harsh criticism for her statements assuring ground zero workers and Lower Manhattan inhabitants of safe air quality.  When pressed to acknowledge that the toxic dust from the collapsed buildings contributed to illness, she declined. Whitman stated that a lack of conclusive evidence existed “linking the dust to disease.” She denied any presence of pressure placed on her to report the air safe in order to quickly reopen the financial district.  She also expressed no regret for her statements in 2001.

Victims of ground zero exposure brought multiple lawsuits against Christine Todd Whitman, however; the Second Circuit Court of Appeals found that Whitman could not be held liable.

In January 2011, President Barack Obama signed into law the Zadroga Act, which expanded the September 11th Victim’s Compensation Fund to include ground zero workers who died from cancer or respiratory diseases, “under the presumption that the cause was due to exposure during recovery efforts.” The act “sets aside money for medical care and $2.775 billion dollars to compensate claimants for lost wages and other damages related to the illnesses.”

Although initially excluded from the Act, the Act was amended to include cancer to the list of ground zero diseases, acknowledging a link between ground zero air and cancer. To date, 50 types of cancers will be covered.  Noah Kushlefsky, an attorney representing 3,800 ground zero victims, foresees that with the addition of cancer, the $2.775 billion will be exhausted before all the victims receive adequate compensation. The addition of numerous cancers to be covered by the Act comes on the heels of Congressional attempts to reduce the deficit. The Zadroga Act faces $300 million in cuts.

The FealGood Foundation, an organization dedicated to supporting the health and welfare of 9/11 first responders, compiled a list of known first responders with cancer and those who died from cancer on their website. Ground zero victims and their families are now seeking legal representation in order to access the victim’s fund.

Symposium: Implementing the Affordable Care Act: What Role for Accountable Care Organizations?

In conjunction with the Center for Health & Pharmaceutical Law & Policy, this year’s SETON HALL LAW REVIEW Symposium will explore recent changes in the structure of health care delivery, in particular the rising popularity of Accountable Care Organizations (ACOs).

Legal scholars and practitioners from around the country will present panel discussions on structural development, public health implications and lessons learned from state ACO programs. Luncheon keynote speaker will be Dr. Jeffrey Brenner, founder of the Camden Coalition of Healthcare Providers.

Scheduled Panels & Panelists include

Introduction to Accountable Care Organizations

Jorge Lopez (Partner, Akin Gump Strauss Hauer & Feld LLP): Promise and Pitfalls: Health Reform’s Medicare ACO Shared Savings Program

Hal Teitelbaum (CEO and Managing Partner, Crystal Run Healthcare): The Prospect of Being Hanged: Focusing the Physician Mind on ACOs

Michael Kalison (Chairman of Applied Medical Software, Inc.; Of Counsel, McElroy, Deutsch, Mulvaney, & Carpenter): The Lessons of Gainsharing

ACOs in Theory: Issues Raised by Integrated Delivery

Jessica Mantel (Co-Director, Health Law & Policy Institute, University of Houston, Law Center): ACOs: Can we have our cake and eat it too?

Priscilla Keith (Adjunct Professor and Director of Research and Projects, Hall Center for Law and Health, Indiana University School of Law – Indianapolis): The Impact of Accountable Care Organizations on Public Health

Tara Ragone (Research Fellow, Seton Hall Law School): The Role of Competition in Integrated Delivery: ACOs, Federal and State Antitrust Law, and the State Action Doctrine

Keynote

Jeffrey Brenner, M.D., Founder & Executive Director, Camden Coalition of Healthcare Providers

Jeffrey Brenner is a family physician and has practiced in Camden for eleven years as a front-line primary care provider for patients of all ages. Having owned a private practice in Camden, he has experience in implementing electronic health records and running a paperless office, open-access scheduling, as well as first-hand knowledge of the various challenges facing primary care in the current health system.

He currently serves full-time as the Coalition’s Executive Director, where he spends much of his time meeting with stakeholders and policymakers, advocating for the models of care the Coalition has developed and demonstrated through data centric results. Jeff is a faculty member of the Robert Wood Johnson Medical School in Camden and is also a former resident of Camden, having lived in the city for over 8 years. He is a graduate of Vassar College and the Robert Wood Johnson Medical School.

ACOs in Practice: Research on Current Implementation of ACOs

Louise Trubek (Clinical Professor, University of Wisconsin Law School), Barbara Zabawa (Whyte Hirschboeck Dudek, S.C); Felice Borisy-Rudin (University of Wisconsin Law School): Accountable care organizations in two states: A preliminary analysis

Sallie Sanford (Assistant Professor of Law, University of Washington – School of Law & School of Public Health): State-based ACO and Medical Home Pilots: Early Lessons from the Other Washington

John Jacobi (Faculty Director & Dorothea Dix Professor of Health Law & Policy, Seton Hall University School of Law), Lessons from ACO Implementation in New Jersey.

Thomas Greaney (Chester A. Myers Professor of Law and Director, Center for Health Law Studies, Saint Louis University School of Law), Accountable Care Organizations: A New New Thing with Some Old Problems.

The event will take place at Seton Hall Law School with luncheon served at The Newark Club, One Newark Center, 22nd floor. There is no charge for Seton Hall Law alumni; cost for all others, $25.  Four NJ/NY CLE credits will be available. Visit http://law.shu.edu/lawreviewsymposium to register. For more information regarding the Symposium, please contact Gianna Cricco-Lizza, Symposium Editor, at gianna.criccolizza@student.shu.edu.

Take Them Away: Has Severe Childhood Obesity Really Come to This?

As a follow up to my previous post on junk food marketing to children and my earlier post on MyPlate — and any other post that I’ve written about children and fast food or junk food — I would like to direct your attention to a commentary recently published in the Journal of the American Medical Association which has caused quite a stir.  In “State Intervention in Life-Threatening Childhood Obesity,” Dr. David Ludwig (Director of the Optimal Weight for Life Program at Children’s Hospital in Boston, Massachusetts) and lawyer Lindsey Murtagh (Research Associate for the Department of Health Policy and Management at Harvard School of Public Health) confront severe childhood obesity — which is “characterized by a body mass index (BMI) at or beyond the 99th percentile” — with what appears to be a wild and rash line of thought: remove severely obese children from their homes and place them into foster care.

In their commentary, Dr. Ludwig and Ms. Murtagh write that

[s]tate intervention may serve the best interests of many children with life-threatening obesity, comprising the only realistic way to control harmful behaviors. Child protective services typically provide intermediate options such as in-home social supports, parenting training, counseling, and financial assistance, that may address underlying problems without resorting to removal. These less burdensome forms of legal intervention may be sufficient and therefore preferable in many cases. In some instances, support services may be insufficient to prevent severe harm, leaving foster care or bariatric surgery as the only alternatives. Although removal of the child from the home can cause families great emotional pain, this option lacks the physical risks of bariatric surgery.

However, the authors also acknowledge that

removal from the home does not guarantee improved physical health, and substantial psychosocial morbidity may ensue. Thus, the decision to pursue this option must be guided by carefully defined criteria… with less intrusive methods used whenever possible.

Reading through the commentary, one senses an exasperated tone more than anything else.  After all, the authors cite a mind-numbing statistic: there are approximately 2 million severely obese children in the United States.  And how should we treat this epidemic?  With bariatric surgery you say?  And so the authors wonder aloud whether “removal from the home may be justifiable from a legal standpoint because of imminent health risks and the parents’ chronic failure to address medical problems.”

Let’s set aside the legal arguments for a minute and discuss the heart of the matter: America’s eating habits.  Specifically, America’s childrens’ eating habits.   In a response post on MSNBC, Arthur Caplan, Director of the Center for Bioethics at the University of Pennsylvania, criticized Dr. Ludwig and Ms. Murtagh by focusing on other obesity-causing factors, such as the unhealthy “food culture,” that pervades the United States.  Professor Caplan wrote

I am not letting parents off the hook. But, putting the blame for childhood obesity on the home and then arguing that moving kids out of homes where obesity reigns is the answer is short-sighted and doomed to fail. We need the nation to go on a diet together and the most important places to start are at the grocery store, schools and media.

On Booster Shots, the Los Angeles Times health blog, Chris Woolston wrote that removing children from their homes and placing them into foster care will not fix poor eating habits because

[c]hildhood obesity is complicated. Fast food, sodas, TV, video games — many staples of modern life are pushing kids in the wrong direction. While researching a book on this topic a few years ago, I spoke with several moms who were tackling their child’s weight troubles with varying levels of success. One considered putting locks on her cabinets to keep her son from sneaking food in the middle of the night.

Her son was definitely on the large side — beyond that, really — but it’s not because his mom didn’t care. And even if someone had placed him in a foster home it wouldn’t have solved his problems. As a rule, those places have food in their cupboards, too.

Hear, hear.  Wake up, folks.  We need a food culture revolution with healthier and affordable alternatives.  One which teaches our children to choose healthy foods and to eat in moderation.  Because what else must we do before everyone finally, in the words of Professor Caplan, “[d]emonize[s] the companies that sell and market food that is not nutritious” and “[p]ut[s] exercise back on the menu for all school kids”?  Institute state programs that remove severely obese children from their homes and place them into foster care?  Oh, wait….

The Demographics of Illness and Cost: or, An Old Story About Chronic Conditions

We’ve reported on the distribution of health care costs among populations on numerous occasions here at Health Reform Watch. Over the last decades, our own Professor John V. Jacobi has been espousing reform, at times as almost a voice in the wilderness, as a matter of dealing in caring and cost conscious ways with chronic conditions.

In January of 2009 I noted, quoting HHS reports:

Twenty-five percent of the U.S. community population were reported to have one or more of five major chronic conditions:

• Mood disorders
• Diabetes
• Heart disease
• Asthma
• Hypertension

Spending to treat these five conditions alone amounted to $62.3 billion in 1996. Moreover, people with chronic conditions tend to have other conditions and illnesses. , according to 1996 MEPS data. On an individual level, treatment for the average patient with asthma was $663 per year in 1996, but when the full cost of care for asthma and other coexistent illnesses is taken into account, the average cost was $2,779.

When the other illnesses are added in, total expenses for people with these five major chronic conditions rise to $270 billion, or 49 percent of total health care costs.

Expenses for people with one chronic condition were twice as great as for those without any chronic conditions. Spending for those with five or more chronic conditions was about 14 times greater than spending for those without any chronic conditions. Persons with five or more conditions also have high hospital expenditures. In New York State during 2002, of the 1.3 million different persons admitted to the hospital, the 27 percent with five or more chronic conditions accounted for 47 percent of all inpatient costs.

I have also noted in July of 2009 that

…32% of Medicare costs are attributable to diabetes. It is no stretch to say that if we have a Medicare cost problem in this country (we do), what we really have is a diabetes problem (and, considering Halvorsen’s “we only get it right 8% of the time” figure, a diabetes treatment problem as well).

But first things first. 32% is a mere scooch (yes, that’s the technical term) away from ONE THIRD. That’s an enormous number. If one were to relate this portion of Medicare expense to houesehold expenditures, it occupies a place similar to a mortgage– but an expensive mortgage in a house that no one wants to live in.

And now a further health cost demographic from NPR’s Marketplace in conjunction with WHYY’s Health Desk, Gregory Warner. And yes, it’s about chronic conditions:

Tess Vigeland: Take everything this country spends on health care — the government, employers, patients — and it rounds out to a little over $8,000 per person on average.

But averages don’t really tell the whole story. A study by the National Institute for Healthcare Management found that in 2009, 15 percent of us had no health care costs at all. While at the other end, 5 percent accounted for almost half of all health care costs: $1.2 trillion.

….

Gregory Warner: Maybe you picture this high-cost patient as someone at the end of life, confined to a hospital bed and hooked up to expensive medical devices. But more likely, you’ll find this person at home or in a nursing home, living with five or more chronic conditions.

Medicaid Incentives for Healthy Behavior: Turning That Cigarette Back Into Cold Hard Cash

The Centers for Medicare and Medicaid Services (CMS) recently announced a $100 million program through which states can reward Medicaid enrollees who adopt healthy behaviors. The grant program is part of the Patient Protection and Affordable Care Act and allows states to offer incentives for tobacco cessation, controlling or reducing weight, lowering cholesterol or blood pressure, and avoiding the onset of diabetes or improving management of the condition. The goal of the program is prevention, as spending on chronic conditions is said to account for more than 75 percent of annual healthcare expenditures in the U.S.

According to CMS Administrator Dr. Donald Berwick,

With the right incentives, we believe that people can change their behaviors and stop smoking or lose weight. Not only can preventive programs help to improve individuals’ health, by keeping people healthy we can also lower the nation’s overall health care costs.

States are not limited to direct cash incentives– proposed plans could include waiving premiums, deductibles and coinsurance payments, or offering coupons or gift certificates for weight management classes or tobacco cessation counseling.

CMS has based the program on data suggesting a short-term change in behavior when people are offered monetary incentives. Current research shows that while people may be internally motivated to make healthier decisions because of future consequences, they don’t often weigh those delayed outcomes with the immediate reward of engaging in the behavior. For example, knowing that smoking increases lung cancer risk 20 years from now isn’t always going to stop someone from smoking a cigarette. The benefit of monetary incentives is therefore their immediacy– they replace one unhealthy reward with another less harmful one. In short, CMS is betting that someone would put down that cigarette right now if you just paid them to.

But the experience of making healthy decisions seems to align more with what Mark Twain opined in Following the Equator,

He had had much experience of physicians, and said “the only way to keep your health is to eat what you don’t want, drink what you don’t like, and do what you’d druther not.

Though an individual may make a healthy choice now because they would prefer a cash incentive, that doesn’t automatically change their instinctual behavior. Someone could theoretically be convinced to take a grocery store gift card instead of buying a fast food dinner, but that does not change how much they enjoy the taste of a cheeseburger. In many circumstances, people engage in certain behaviors simply because they like to. For this very reason, critics are quick to point out that monetary incentives are unlikely to spur long-term changes in unhealthy habits. Critics also note that there is little research on whether these incentives will be successful in the Medicaid beneficiary population.

What may redeem the initiative from these criticisms is that CMS is candidly calling it a  ”demonstration program,” designed to figure out which strategies produce long-term behavioral changes. By allowing states to develop their own programs and keep data on the experience, CMS seems to be hedging its bets, wagering that at least one program will provide a successful model. Further, CMS can use the data to evaluate other factors such as the administrative costs incurred by states in rendering the programs.

Could $100 million federal grant dollars be used to support preventative health in a different way? Of course. But as long as this money is being set aside to incentivize healthy behavior, we may get an answer to whether external motivators spur long term behavior change. I, for one, would love to know just how much money it costs to convince someone to stop smoking, or to consistently trade in that Big Mac for some broccoli. It almost has to be cheaper than what we’re doing right now.

Childhood Obesity: A Problem Worth Solving

[Ed note: We are pleased to welcome Regina Ram to Health Reform Watch. Regina is finishing her first year as a law student at Seton Hall. She graduated from Drexel University with a B.S. in Biological Sciences and minors in Psychology and Anthropology. She completed a Masters in Public Health from Boston University in 2010 with a focus on Health Law, Bioethics and Human Rights. As a graduate student, Regina worked as a legislative advocate for Dana-Farber Cancer Institute and also supported a SAMHSA funded research program to integrate substance abuse treatment into primary care settings. As an undergraduate, she worked as a healthcare writer and authored emerging technology evidence reports on health devices and procedures.]

Just recently, the New York Times published an article describing the attempt of parents in Philadelphia to change the poor eating habits of the city’s children. A concerned group of parents in a North Philadelphia neighborhood takes turns standing outside of corner stores near a K-8 school in the mornings. They don safety vests and walkie-talkies, and their goal is to discourage kids from stopping at corner stores to buy snacks like soda and candy before school. The article likens the parents to foot soldiers fighting in a national battle over the diets of children.

As dramatic as that may sound, statistics from the Centers for Disease Control and Prevention (CDC) support the metaphor. Nationwide, obesity rates have more than tripled over the past 30 years in both children and adolescents. Long-term consequences include higher risk for heart disease, type 2 diabetes, stroke, several types of cancer, and osteoarthritis in adulthood. More immediate effects include social and psychological problems like stigmatization and poor self-esteem. Further, caring for these health conditions has significant economic effects on the U.S. health care system. All of these statistics portray a battle well worth waging.

But is a group of parents patrolling a convenience store at 8:00 A.M. going to stop childhood obesity? Probably not. Even if the program dissuades kids from buying morning snacks, that behavior is unlikely to continue once parents are gone. Is it a step in the right direction? Certainly. The Surgeon General’s report on overweight and obesity notes that “families and communities lie at the foundation of the solution to the problem.”

However, any successful solution to decrease childhood obesity rates has to involve parents and communities as components of more comprehensive interventions. The causes of obesity in children are multi-factorial, ranging from diet and exercise to genetic and social factors including socioeconomic status and the built environment. The wide array of contributing factors points to the need for an interplay between public and private action to address childhood obesity.

Outside of the home, schools are a key setting for public health efforts to reduce childhood obesity rates. In particular, the National School Lunch Program can be an effective tool in improving the diets of school-age children. Just this year, the U.S. Department of Agriculture announced recommendations to overhaul the nutrition criteria of food programs for the first time in 15 years. The recommendations include limiting salt intake and the use of starchy vegetables, offering only reduced fat milk and using whole grains. Introducing children to healthier foods can help them understand what to eat and why, and that goes much further towards changing future patterns of behavior.

External factors like marketing and advertising also weigh on children’s decisions to eat certain foods. Recent litigation cases (one noted by Jennifer Jascoll here on the HRW website) have focused on the effectiveness of this advertising on children, as well as the disproportionate impact of such advertising on children of lower socioeconomic status. A New York City Councilman recently proposed a bill to ban fast food toys for meals over 500 calories. Children are generally more vulnerable to social messages, and restricting marketing is a case where benefits clearly outweigh the costs.

While involved parents and communities like the one in Philadelphia are undoubtedly an asset, it is going to take a more orchestrated effort to decrease rates of childhood obesity. Parents need to be empowered to make healthy choices and encourage healthier lifestyles for their children. At the same time, schools need to be working hand in hand with the community to ensure that the messages given at school correspond with the messages children hear outside. However unwieldy the issue seems, any action is to be applauded as preferable to no action at all.

(Note: for a more in-depth discussion of the economic consequences of obesity, see Michael Ricciardelli’s article here on HRW)

Why Narratives Do (and Should) Matter in Bioethics

There is a fascinating recent decision from the Indian Supreme Court on the Shanbaug case, regarding a woman who has been in a persistent vegetative state (PVS) for over 37 years. A petitioner who had written a book on Shanbaug (Pinky Viranai) argued for a withdrawal of life support. Shanbaug had no family to intervene, but hospital staff resisted, and the Court ultimately sided with them. While unflinchingly examining the dehumanizing aspects of PVS, the Court offers a remarkable affirmation of the good will of the staff who have taken care of Shanbaug:

[I]t is evident that the KEM Hospital staff right from the Dean, including the present Dean Dr. Sanjay Oak and down to the staff nurses and para-medical staff have been looking after Aruna for 38 years day and night. What they have done is simply marvelous. They feed Aruna, wash her, bathe her, cut her nails, and generally take care of her, and they have been doing this not on a few occasions but day and night, year after year. The whole country must learn the meaning of dedication and sacrifice from the KEM hospital staff. In 38 years Aruna has not developed one bed sore. It is thus obvious that the KEM hospital staff has developed an emotional bonding and attachment to Aruna Shanbaug, and in a sense they are her real family today.

After a scholarly survey of many countries and U.S. states’ laws on withdrawal of life support, the Court concludes:

A decision has to be taken to discontinue life support either by the parents or the spouse or other close relatives, or in the absence of any of them, such a decision can be taken even by a person or a body of persons acting as a next friend. It can also be taken by the doctors attending the patient. However, the decision should be taken bona fide in the best interest of the patient. . . .

Read more

Time To Tighten That Belt….

Keep an eye out for the April edition of the American Journal of Medicine.  In it, the Los Angeles Times and U.S. News Health Blog report that you will find a new study from the Centers for Disease Control and Prevention (CDC) which identifies the “diabetes belt.”  Almost 26 million Americans – that’s 8% of the population – have type-2 diabetes, the most common form of diabetes (as opposed to type-1) often connected with weight and physical activity.  In a county-by-county census, the CDC  identifies 644 counties in 15 states where the type-2 diabetes rates are higher (11%) than the national average (8.5%).  Ethnicity, age, weight, and a sedentary lifestyle were found to be key factors.

The Los Angeles Times describes the “belt” as stretching “down the southeastern seaboard, ’round the silty Mississippi Delta and following the Appalachian Mountains north across Tennessee, Kentucky and West Virginia” and including parts of Pennsylvania (but stopping short of New Jersey).  Dr. Lawrence Phillips, who studies diabetes at Emory University, told Reuters that

[s]ince diabetes is one of what we call the silent killer diseases … it’s important for the public to be aware that this is a problem….  What this does is to give health care providers ammunition. A provider can say, ‘We’re in the diabetes belt. All of these things are increased in part because of the way we live, and all of these things can be improved to a certain extent. Our risks can be decreased … by eating healthier and to the extent that we can, being less sedentary.’”

The “diabetes belt” appears to overlap with the decades-old “stroke belt” and the recently identified “heart failure belt.” Be sure to check out whether your home state falls within one of these belts.  And then remember to tighten yours.

A Guide to the Patient-Centered Medical Home

As the United States continues on its path towards reforming its health care system, it will be governed primarily by the Patient Protection and Affordable Care Act (PPACA). One of the means by which the legislation attempts to institute reforms is through the use of pilot programs. In a previous post, I examined the pilot program known as the “accountable care organization” (ACO) which effectively formalizes and leverages existing  networks of physicians and providers in an effort to increase cooperation across the continuum of care; the hypothesis being that an organization that is accountable for a broader range of care can more effectively coordinate and efficiently deliver that care.

PPACA does not limit itself to ACOs. Another pilot program contained in the legislation is the medical home, commonly referred to as the “Patient-Centered Medical Home” (PCMH). The PCMH concept is not new. The American Academy of Pediatrics coined the term medical home back in 1967. Through the following decades, the concept of a medical home has, however, been refined. Throughout the 1970′s, the American Academy of Pediatrics continued to discuss the important role of a medical home in pediatric care, releasing a number of reports focusing on the proper role of a medical home for pediatric care.

That medical homes were spawned in the context of pediatrics is not  surprising: children are particularly unable to coordinate their own care, or, in many cases, even effectively communicate the narrative of the care which has transpired.  As such, it becomes the role of  parents, physicians, and others in the health care delivery system to communicate and coordinate the care of  the child. Parents are not always available or able. Logically, there must be some locus of coordination. In some ways, the primary care physician within the Patient- Centered Medical Home stands figuratively, as regards the coordination of medical care, in loco parentis.

Recognizing the importance of the medical home, the AAP created a task force to define the medical home.  In 1996, the influential Institute of Medicine embraced the concept of medical homes. They did not, however, limit their discussion of the medical home to children, but instead stressed the importance of care coordination for many, if not all, patients. (Click here to read IOM’s discussion on the matter). IOM’s belief in the general importance of medical homes has proven prescient in light of the ever-increasing complexity of clinical diagnosis and treatment that operates in an increasingly fragmented health care system. It has become increasingly difficult, even for adult patients, to communicate and coordinate care.

Principles of Patient Centered Medical Homes

In 2007, the American Academy of Family Physicians, the American Academy of Pediatrics, the American College of Physicians, and the American Osteopathic Association released “Joint Principles of the Patient-Centered Medical Home.” In it they distilled the following seven principles of the medical home. They are, in part:

1.       Personal physician – each patient has an ongoing relationship with a personal physician trained to provide first contact, continuous and comprehensive care.

2.      Physician directed medical practice – the personal physician leads a team of individuals at the practice level who collectively take responsibility for the ongoing care of patients.

3.      Whole person orientation – the personal physician is responsible for providing for all the patient’s health care needs or taking responsibility for appropriately arranging care with other qualified professionals. This includes care for all stages of life; acute care; chronic care; preventive services; and end of life care.

4.      Care is coordinated and/or integrated across all elements of the complex health care system (e.g., subspecialty care, hospitals, home health agencies, nursing homes) and the patient’s community (e.g., family, public and private community-based services). Care is facilitated by registries, information technology, health information exchange and other means to assure that patients get the indicated care when and where they need and want it in a culturally and linguistically appropriate manner.

5.      Quality and safety are hallmarks of the medical home.

6.      Enhanced access to care is available through systems such as open scheduling, expanded hours and new options for communication between patients, their personal physician, and practice staff.

7.      Payment appropriately recognizes the added value provided to patients who have a patient-centered medical home.

The Cornerstones of Patient Centered Medical Homes

Diane Rittenhouse and Steven Shortell have distilled four cornerstones for PCMHs from the above principles:

The four cornerstones of PCMHs, as represented in a talk given by Dianne Rittenhouse

Recently, Rittenhouse gave a talk to UCSF where she did an excellent job of explaining the four cornerstones in the context of the U.S. health care system. The link below jumps straight to the discussion of the cornerstones or you can watch the presentation in its entirety below.

A Discussion by Dianne Rittenhouse on the Cornerstones of the PCMH

As is clear from the joint principles and cornerstones, primary care is the distinguishing factor of the PCMH, as opposed to other models such as the ACO. As Rittenhouse and her colleagues have noted: “The PCMH model emphasizes the creation of a strong primary care foundation for the health care system, and the ACO model emphasizes the alignment of incentives and accountability for providers across the continuum of care.”

Patient Centered Medical Homes in Practice

Are PCMHs a pipe dream? Do we have any experience with them? The answer to the second question is yes, a substantial number of PCMH demonstrations are occurring throughout the country. A recent study by Bitton and colleagues at Harvard Medical School looked at 26 currently active PCMH pilots that incorporated 14,494 physicians, 4,707 practices, and served nearly 5 million patients. The researchers found that there were two ways of using PCMHs to transform health care delivery: a “consultive model” and a “chronic care model.” (For more information see Bitton et al., “Patient Centered Medical Home Demonstration Projects,” Journal of General Internal Medicine, available here.)

The chronic care model focuses on using quality improvement coaching to identify characteristics of care systems that must be changed to improve the treatment of chronic diseases.  The consultive model typically features proscriptive change in practice management most often carried out by external facilitators hired to organize assessment and transformation. (See Bitton page 590). As Bitton notes, the majority of pilot programs surveyed used the chronic care model, with those groups focusing specifically on asthma and diabetes. These initiatives were often the product of state activities, including Regional Health Information Organizations (RHIOs), Quality Improvement Organizations, and other state programs.

In order to become a PCMH, most practices have needed to apply to be recognized as such. The application process often requires the use of an assessment tool created by the National Committee for Quality Assurance — a group comprised of the same organizations who released the Joint Statement mentioned earlier. To accomplish this process the NCQA created the Physician Practice Connections – Patient-Centered Medical Home (PPC-PCMH) program to create a framework for medical home recognition. As stated on the NCQA website: “There are nine PPC® standards, including 10 must pass elements, which can result in one of three levels of recognition. Practices seeking PPC®-PCMH^TM complete a Web-based data collection tool and provide documentation that validates responses.” These standards are used to gauge the “medical homeness” of the applicant.

Payment Reform as the Rate-Limiting Step

As noted by Rittenhouse and others, payment reform is one of the cornerstones of the PCMH model. In the demonstrations currently underway, payment reform has been typically realized by a “three part” model adopted by the Patient-Centered Primary Care Collaborative (PCPCC) — a coalition of major employers, consumer groups, patient quality organizations, labor unions, and others, that have come together to facilitate the creation of PCMHs. The payment model is comprised of:

1.      Ongoing fee-for-service payments

2.      A fixed (typically monthly) case management fee; and

3.      Pay for Performance potential bonus payments

As the PCPCC states: “Payment reform should correct existing imbalances and distortions in physician payment and take into account value created by primary care, especially in the areas of cost, quality, care coordination, access, and patient centeredness.” However, the Bitton study had some unfortunate conclusions with respect to payment reform in extant PCMHs. The study found that many of the PCMH demonstrations currently retain the fee-for-service model as the core method of reimbursement and, despite the efforts at creating a common framework, “substantial variability” in the form, payment methods, and means of practice transformation. Such variation does not seem to favor smaller practices.

Though the PCPCC has attracted a broad range of industry groups to sign on to their PCMH model, it is unclear how a model that retains the traditional fee-for-service framework will work. Even if the FFS model could work, Bitton’s study found that only some of the demonstrations included up-front payments that could be put towards the required investments for transformation.  For the ACO model, upfront costs and uncertainties can be more easily absorbed because of the larger organizational structure of the ACO. However, many primary care physicians practice in small groups. The IT investments and other transformations will require time and resources that many primary care physicians may find difficult to swallow. Moreover, as Rittenhouse notes, the PCMH model does not provide incentives to those outside of primary care to work with the primary care physicians collaboratively. This will only compound the difficultly of  implementing PCMHs. Rittenhouse does, however, offer a glimmer of hope: the synergizing role of ACOs. As ACOs will benefit from the primary care focus of PCMHs, Rittenhouse believes that PCMHs can leverage the ACOs delivery system infrastructure to make the implementation of PCMHs more realistic.

Access to HIV/AIDS Medicines

The Campaign for Access to Essential Medicines explains why UNITAID’s efforts to develop a patent pool of HIV/AIDS treatments are so important:

Meanwhile, the US health care finance system appears to be getting into a bit of a standoff with HIV/AIDS drug makers:

Without reliable access to the medications, which cost patients in the AIDS Drug Assistance Program an average of $12,000 a year, people with H.I.V. are more likely to develop full-blown AIDS, transmit the virus and require expensive hospitalizations. Eleven states have closed enrollment in the federal program, most recently Florida, which has the nation’s third-largest population of people with H.I.V.

The need for programs like the Health Impact Fund is more urgent than ever.

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.

Cost, Choice, and Value

The Massachusetts Massacre has everyone stepping back a bit.  The President says that we should “coalesce around those elements of the package that people agree on,” but it is unclear just which elements those might be, given the extreme polarization that has defined the debate.  He suggests that points of agreement might center on insurance reform and cost containment, which are both important goals.  I’m skeptical that a sudden flowering of bipartisanship will allow such agreement, however.  Ezra Klein, on the other hand, has a paring proposal that goes in another direction, and reminds us of why we got into this in the first place: to extend coverage to the uninsured.  If we must narrow our focus, Klein says we should extend Medicare to those over 50, and expand Medicaid to those under 200% of poverty.  This would get lots of people insured, and could well be accomplished through budget reconciliation if no Congressional coalescing is to be had.

However the parsing, paring, and palavering goes, cost control is and will be at or near the health reform debate for years to come.  Two recent articles are worth a look for those interested in analysis of cost-containment strategies.

In his health care speech to Congress, the President suggested that one component of an effort to lower health care costs should be to empower a commission of “doctors and medical experts” to identify and,

encourage the adoption of  . . . common-sense best practices by doctors and medical professionals throughout the system. Wrapped up in that suggestion are notions of adhering to expert guidance in treatment decisions.

The stimulus bill passed in February pushed for scientific assessment of modes of care, providing $1.1 billion for comparative effectiveness research.  The current reform bills further emphasize CER, and would encourage the adoption of proven and promising treatments through professional education and some payment reform.  Harvard Medical School professor Jerome Groopman writes on evidence-based medicine in the latest New York Review of Books.   In his 2007 book, How Doctors Think, Groopman did a great job of explaining the complex and fraught process by which doctors make decisions, and he is fully on board with the notion that there is ample room for improvement.  His new article, however, cautions that the use of panels of experts with authority to impose or even recommend best practices is a dangerous way to go.

Groopman acknowledges the need for health policy folks to consider the bounded rationality of both doctor and patient.  He examines the Obama Administration’s policies on evidence-based practice by contrasting the views of two key advisors: Cass Sunstein, whose view of “libertarian paternalism” incline him to favor gentle “nudges” that may encourage certain behavior while leaving people free to reject the advice if they wish, and Peter Orszag, who is more inclined to employ forceful regulatory standards and financial incentives to achieve cost effective medical practice.  Groopman is compellingly  skeptical of expert claims of definitive standards on what “works” in health care, and cautions that such standards can result in harm to patients who fit uncomfortably into the hard categories defined in such best practices.

Groopman’s analysis seems incomplete for two closely intertwined reasons, and surely as a result of space constraints.  First, he suggests that the administration is faced with a stark choice between

aggressively pushing doctors and patients to do what the government defines as best, or [being] respectful of their own autonomy in making decisions.

Surely there is much middle ground between tying doctors’ hands and respecting complete clinical independence.  And it is not enough to say, as does Groopman, that

Most physicians seek data and views on treatments from peers and, as needed, specialists, and then present information and opinion to patients who ultimately decide.

Maybe so, but physicians are sometimes self-interested, and patients’ choices  are sometimes influenced by advertisements or other considerations disconnected from quality concerns.  For these and other reasons, spending decisions are no longer consigned to the doctor/patient dyad, but increasingly must accommodate the cost-containment interests of third party payers — government, employers, or insurers.

Second, Groopman describes two exclusive categories of procedures: “mechanical procedures” such as the  insertion an intravenous catheter (where he argues that enforcing standards to avoid infections is proper) and all other procedures, where the individual patient’s condition becomes relevant, and where he argues that coercing clinical choices is out of bounds.  It is not obvious that the universe of procedures is so divisible; it is even less clear that the dividing line between the two categories is uncontroversial.

Many questions remain.  Groopman is surely right that we must be cautious in enforcing categorical “best practices;” it is important to create public processes for vetting their accuracy and usefulness.  He is also surely right that public and private health finance rules must accommodate variation in medical needs, and must bend readily when a “best practice” is not suitable for a particular case.  But cost is relevant, and encouraging efficient practice can reduce the cost (and therefore the extent) of coverage.

So, how might a balance between financial constraints and patient protection work?  In a Health Affairs article posted  yesterday, Michael Chernew and coauthors examine the growing phenomenon of “value-based insurance” — a structuring of insurance co-payments responsive to the needs of people with chronic illness.  The co-payments imposed by insurers are, of course, intended to reduce demand for health care services (an Orszag, not a Sunstein tool, you might say).  Value based insurance reduces or eliminates these co-payments for services of “high clinical value.”  That is, if an insurer determines that it would rather not discourage utilization for a particular service, it reduces or removes the patient cost-sharing, presumably increasing usage, for cost as well as clinical reasons.  As the authors explain,

The belief that a value-based insurance program will lower health care spending rests on the recognition that the use of high-value health care services reduces the probability of adverse events related to chronic disease and that on a population basis, these events are much more costly than the services aimed at preventing them.

The authors found some evidence that such programs are cost effective, even in the narrow sense of reducing a plan’s health care expenditures.  They suggest that widening the economic lens to consider broader societal goals would only strengthen those conclusions.

The article acknowledges the reality of economic coercion in the clinical setting, and measures attempts to shape the tools of cost containment in a way that protects patients while maintaining cost containment.  One doesn’t have to accept the general wisdom of patient cost-sharing to value attempts to protect patients from untoward effects of its use.

The need to obtain “value” for health care spending and to take steps to restrain health inflation will persist however we come out of the current reform debate.  The discussion will benefit from both the erudite analysis of Groopman and others warning us away from answers that are too easy, and that of Chernew and others who can shine a light on the efficacy of particular cost containing measures.

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.

New Jersey Legislature Passes Medical Marijuana Bill

Yesterday, the last day of its 2008-2009 legislative session, the New Jersey legislature voted to legalize the use of medical marijuana by New Jersey residents suffering from debilitating medical conditions.

The version of the New Jersey Compassionate Use Medical Marijuana Act passed yesterday represents a compromise between the version that the state Senate passed in February of 2009, which Seton Hall Law’s Center for Health & Pharmaceutical Law & Policy endorsed in a position paper distributed to key lawmakers, and the Assembly version, which included a number of amendments intended to bolster the Act’s already strict safeguards against abuse and diversion.  (The differences between the Assembly and Senate versions are outlined here; a summary of the changes made in the final legislation is posted here on the Legislature’s website.)   Governor Corzine is expected to sign the Act into law before he leaves office next week.

Among other changes, the final legislation:

• revises the definition of “debilitating medical condition” to specify that severe or chronic pain, severe nausea or vomiting, and cachexia or wasting syndrome qualify a patient to use medical marijuana if they are symptoms of cancer, HIV/AIDS, “or the treatment thereof.” The new definition also adds inflammatory bowel disease, including Crohn’s disease, muscular dystrophy, and terminal illnesses expected to cause death in 12 months or less to the list of debilitating conditions;

• deletes the Assembly provision that allowed patients to designate an individual to transport marijuana to them in an emergency, and reverts to the Senate language allowing patients to designate a primary caregiver to assist them with their use of medical marijuana on an ongoing basis; and

• preserves the Assembly version’s requirement that patients obtain their marijuana from “medical marijuana alternative treatment centers,” i.e., that they not be allowed to grow their own, but increases the amount of marijuana that patients can be dispensed in a 30-day period from one ounce to two ounces.

Interestingly, the final legislation also requires that the system the Division of Consumer Affairs in the Department of Law and Public Safety establishes to monitor the dispensation of marijuana for medical use must “serve the same purpose as, and be cross-referenced with” the Division’s system for monitoring the dispensation of certain prescription drugs with the potential for abuse.  This is further evidence that marijuana is slowly but surely, as Fordham Law Professor Kimani Paul-Emile writes, “migrating from the criminal regulatory regime into the public health regulatory regime.”

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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