Sunday, May 31, 2009

Does AARP Have A Serious Conflict of Interest?

AARP presents itself as serving the needs of its members, people over age 50. But there is another side to AARP which merits attention.

AARP's 12/31/2007 Consolidated Financial Statements (click title above) show membership dues of $249,353 (in thousands). Many of its members buy policies and obtain insurance services from large national insurers which, in turn, pay AARP royalties for the use of its intellectual property, (name, logo and mailing list) which the financial statements show as $497,635 (in thousands), In addition, the consolidated financial statements describe the AARP Foundation, a 501(c)(3) (tax exempt financial affiliate which receives funding "principally from the federal government, AARP, foundations, corporations and individuals. The Foundation's Board of Directors is composed of members appointed by AARP, Inc.'s Board of Directors."

Typically, business executives (and AARP is a business) find dependable cash flow to be highly addictive. Cash is the life blood of any business. So, I ask, since the AARP, directly and indirectly, is involved in the process of health care reform, is AARP's dependence on cash flow derived from royalties from health insurers, and other funders, who would be affected by any meaningful health care reform a fatal conflict of interest for AARP? Who is AARP truly representing: its insurers, who pay royalties, its other funders, or its members? And how do we know how AARP is resolving this clear conflict?

Perhaps someone from AARP would care to tell us how AARP deals with this overt conflict of interests?

Thursday, May 28, 2009

Kings County ER Psychiatric Facility "Highly Dangerous"

The New York Times reports today (May 28, 2009 p. A21) that a United States Department of Justice report noted that the Kings County Hospital psychiatric unit conditions were "highly dangerous and require immediate attention." The report also found that ". . . in at least three cases ... employees falsified records to hide their neglect."

My suggestion to readers: invite a local prominent political figure (preferably one with ambitions) to join you in a visit to a local ER just to look and listen. If the political figure agrees, it will be a learning experience for both of you. If the political figure refuses, let the voters in your area know.

Wednesday, May 27, 2009

Not Your Television Hospital ER

Have you been to a metropolitan hospital emergency department recently? Did you feel that your health complaint was taken seriously and that you were taken care-of competently? If you had to be admitted, were you promptly moved from the ER to the hospital bed you needed?

The full article below, can be found at the CDC's site (http://www.cdc.gov/nchs/products/pubs/pubd/hestats/ed_capacity/ED_capacity.htm#) and may help to explain why your experience left a great deal to be desired. It doesn't detail the history of hospitals "running" local physicians out of their ERs when they contracted with professional ER doctors to run the show, in part because of the federal ERISA requirement that a patient presenting at the ER must be evaluated and stabilized before transfer or discharge. Nor does it talk about the revenue stream generated by ERs, a complex analysis in itself.

"NCHS Health E-Stat
"Estimates of Emergency Department Capacity: United States, 2007


"On this Page

* References
* Figures
* Tables

"PDF Version (103 KB) by Linda F. McCaig, M.P.H., Jianmin Xu, M.S., and Richard W. Niska, M.D., M.P.H., F.A.C.E.P., Division of Health Care Statistics



"In 2006, the Institute of Medicine (IOM) released a report titled "Hospital-Based Emergency Care: At the Breaking Point," which identified weaknesses in the nation’s ability to respond to large-scale emergency situations, whether disease outbreaks such as pandemic influenza, naturally occurring disasters, or acts of terrorism (1). Over the last several decades, the role of emergency departments (EDs) has expanded from treating seriously ill and injured patients to providing urgent unscheduled care to patients unable to gain access to their providers in a timely fashion and to providing primary care to Medicaid beneficiaries and persons without insurance. EDs are now frequently overloaded. One of the most common factors related to ED crowding is the inability to transfer ED patients to an inpatient bed once a decision has been made to admit them (2). As the ED begins to "board" patients, the space, the staff, and the resources available to treat new patients are further reduced. A consequence of overcrowded EDs is ambulance diversion, in which EDs close their doors to incoming ambulances. The resulting treatment delay can be catastrophic for the patient. Approximately 500,000 ambulances are diverted annually in the United States (i.e., one ambulance diversion per minute) (3).

The National Hospital Ambulatory Medical Care Survey (NHAMCS), inaugurated in 1992, is the longest continuously running nationally representative survey of hospital ED utilization. The NHAMCS is conducted by the Centers for Disease Control and Prevention’s National Center for Health Statistics (NCHS). This Health E-stat provides ED level estimates for items that were added to the 2007 NHAMCS hospital induction interview in response to the IOM report (1).

"Although large EDs (annual visit volume greater than 50,000) in metropolitan statistical areas (MSAs) comprised 17.7 percent of EDs (data not shown), they accounted for 43.8 percent of all ED visits (Figure). The implication is that small EDs (annual visit volume less than 20,000) may not experience crowding and, therefore, have little need for some of the techniques suggested in the IOM report. The IOM recommendations are particularly important for large, urban EDs, which experience higher visit volumes.

"About one-half of all hospitals with EDs had a bed coordinator or bed czar, 58.2 percent had elective surgeries scheduled 5 days a week, and 66.1 percent had bed census data available instantaneously (Table). Electronic medical records (EMRs), either all electronic or part paper and part electronic, were used in 61.6 percent of EDs. EMR systems have also been defined as basic (patient demographics, problem lists, clinical notes, orders for prescription, and viewing laboratory and imaging results) or fully functional (prescription orders sent electronically, warnings of drug interactions or contraindications, orders for tests, out-of-range test levels highlighted, medical history and followup, and reminders for guideline-based interventions in addition to the basic elements) (4). Basic EMR systems were reported by 14.9% of EDs (data not shown); however, the estimate for fully functional EMR systems was unreliable.

"More than one-third of EDs had an observation or clinical decision unit. Admitted ED patients were "boarded" for more than 2 hours in the ED while waiting for an inpatient bed in 62.5 percent of EDs. Among EDs that "boarded" patients, 14.8 percent used inpatient hallways or another space outside the ED when it was critically overloaded. In the previous 2 years, 24.3 percent of EDs increased the number of standard treatment spaces. Although 19.5 percent of EDs expanded their physical space in the last 2 years, 31.5 percent of those that did not expand their physical space plan to do so within the next 2 years. The frequency of use of ED patient care techniques was as follows: bedside registration (66.1%), computer-assisted triage (40.0%), zone nursing (35.3%), electronic dashboard (35.2%), separate fast track unit for nonurgent care (33.8%), "pool" nurses (33.2%), full capacity protocol (21.1%), and radio frequency identification tracking (9.8%).

"The table presents estimates of ED characteristics by ED visit volume and MSA status. When compared with small EDs, large EDs were more likely to have a bed coordinator in their hospitals (71.2% compared with 33.8%); have an observation or clinical decision unit (53.5% compared with 32.5%); "board" patients for more than 2 hours in the ED while waiting for an inpatient bed (86.5% compared with 39.0%); and use bedside registration (89.0% compared with 54.2%), computer-assisted triage (62.2% compared with 24.3%), and zone nursing (61.9% compared with 19.0%).

"EDs with over 20,000 annual visits comprised 70.5 percent of EDs in MSAs. When compared to EDs in non-MSAs, EDs in MSAs were more likely to have a bed coordinator or bed czar in their hospital (60.7% compared with 30.0%) and "board" patients for more than 2 hours in the ED while waiting for an inpatient bed (77.4% compared with 32.8%).

"Additional information about ED utilization is available from the NCHS Ambulatory Health Care website.


"References

1. Institute of Medicine. Hospital-Based Emergency Care: At the Breaking Point. Washington, DC: National Academy Press. 2006.
2. General Accounting Office. Hospital Emergency Departments: Crowded Conditions Vary Among Hospitals and Communities. Washington, DC: General Accounting Office. 2003.
3. Burt CW, McCaig LF, Valverde RH. Analysis of ambulance transports and diversions among U.S. emergency departments. Ann Emerg Med 47(4):317-326. 2006.
4. DesRoches CM, Campbell EG, Rao SR, Donelan K, Ferris TG, Jha A, et al. Electronic health records in ambulatory care -- a national survey of physicians. N Engl J Med 359:50-60. 2008."

Thursday, May 21, 2009

NIH Requests Comments on Stem Cell Guidelines

For a link directly to the NIH site, and the full document text, click the title above.

SUMMARY: The National Institutes of Health (NIH) is requesting public comment on draft guidelines entitled "National Institutes of Health Guidelines for Human Stem Cell Research" (Guidelines).

The purpose of these draft Guidelines is to implement Executive Order 13505, issued on March 9, 2009, as it pertains to extramural NIH-funded research, to establish policy and procedures under which NIH will fund research in this area, and to help ensure that NIH-funded research in this area is ethically responsible, scientifically worthy, and conducted in accordance with applicable law. Internal NIH procedures, consistent with Executive Order 13505 and these Guidelines, will govern the conduct of intramural NIH research involving human stem cells.

These draft Guidelines would allow funding for research using human embryonic stem cells that were derived from embryos created by in vitro fertilization (IVF) for reproductive purposes and were no longer needed for that purpose. Funding will continue to be allowed for human stem cell research using adult stem cells and induced pluripotent stem cells. Specifically, these Guidelines describe the conditions and informed consent procedures that would have been required during the derivation of human embryonic stem cells for research using these cells to be funded by the NIH. NIH funding for research using human embryonic stem cells derived from other sources, including somatic cell nuclear transfer, parthenogenesis, and/or IVF embryos created for research purposes, is not allowed under these Guidelines.

Flomax Helps Men to Urinate - But Not To See the Bowl

Flomax finally got the story it deserved in Roni Caryn Rabin's New York Times article "Cataract Surgery Complications Are Linked to a Urinary Drug" at page A17, May 20, 2009.

This drug seemed to be promoted on every television channel by its manufacturer, Boehringer Ingelheim Pharmaceuticals, Inc., showing men on bikes having to stop to urinate. But the ads, like many direct-to-patient advertisements, did not tell the whole story. Although the ads mentioned that men should tell their ophthalmologists about their use of the drug if they were considering cataract surgery, the ads did not clearly say that the price of using Flomax - one of many drugs for prostatic enlargement caused slowing of the urinary stream - was a major complication risk, called the "floppy iris syndrome." According to a study cited in the Times article, about 7.5% of the patient taking Flomax before surgery had a serious postoperative complication.

My observation is that direct to consumer pharmaceutical advertising demonstrates pharmaceutical industry contempt for patients. The ads provide inadequate information, often leaving out important facts, and work to undercut trained medical professional expertise in critically determining what is best for the patient and engaging in a direct discussion between the prescriber and patient. The drug companies don't want the patient to ask for their drug, they are promoting the patient's demand for the drug and their own profits.

For those men with the floppy iris syndrome who can now urinate, but have difficulty seeing, perhaps Boehringer Ingelheim can provide a big new improved target in your toilet bowl. Will they feature that in their new ads?

Labels: Flomax, Floppy Iris Syndromee, Prostate, Urinate

Tuesday, May 19, 2009

The Face Of Really Bad Medical Care

She was an elderly cultured woman, someone's grandmother, admitted to a large impersonal ward with green walls in a busy city hospital. I was not her doctor, but because I knew her before admission, I dropped by periodically to say hello. I recall that initially, she had some right upper quadrant abdominal pain and slight jaundice. Someone in the family told me that she had gallstones and was obstructed, but that the doctors thought she was too great a risk for them to operate. Day after day, she languished because none of the doctors wanted to risk his reputation with this patient who, as a consequence, deteriorated steadily.

When meal trays were distributed, the nursing assistants congregated at the end of the ward and socialized. No one helped the patient, no one cared whether she ate or not, no one seemed concerned about her fluid balance and dehydration, and when the nursing assistants picked up the patient's tray with all of the food intact, they said nothing to the patient.

The system ground on. One day I stopped in to find a different patient in the bed. Someone's grandmother had died from medical and nursing neglect, but the institution took no notice other than to change the linens and find a new occupant for the bed.

Saturday, May 16, 2009

What's Missing? Part II

I don't make stuff up. Read this paragraph from Obama's Health Care update site and ask yourself what is missing (what group with a significant interest in health care seems to have been overlooked) For the complete text click the title above.

"The President has vowed that the health reform process will be different in his Administration – an open, inclusive, and transparent process where all ideas are encouraged and all parties work together to find a solution to the health care crisis. Working together with members of Congress, doctors and hospitals, businesses and unions, and other key health care stakeholders, the President is committed to making sure we finally enact comprehensive health care reform."

Thursday, May 14, 2009

The Walter Reed Experience Reduplicated

The recent murderous attack by a 3rd Iraq deployment Sergeant prompted me to think back two years to the Walter Reed Hospital scandal, in which brain injured, severely wounded and post-traumatic stress disordered personnel were lodged in horrible facilities and provided with back-ward care (click on title for Soldiers Face Neglect, Frustration At Army's Top Medical Facility by Dana Priest and Anne Hull,
Washington Post Staff Writers, Sunday, February 18, 2007; Page A01). If this was the care that an arrogant neglectful Congress and our politician-led armed forces provided to men and women who were willing to give their lives and limbs on behalf of their country, should we stop a consider whether we should have a universal health system, controlled at the top by our federal government and its bureaucracy?

Unless we have a moral and ethical framework, upon which our proposed federal health reform is built and contained, we will be duplicating and expanding the philosophy and conditions which led to the uncaring and inhumane Walter Reed Hospital experience. If health care is the domain of hospital administrators, insurance company executives, nursing home operatives, pharmaceutical manufacturers and sales people, we will not have a humane, appropriate and ethical health care system.

Mr. Obama, I would rather hear that you were meeting with persons on the front lines of patient care, and ethicists, than with health industry related major political donors. Those who have the daily responsibility for patients' well being, and ethicists, can tell us what we need to do to build a great health system. The industry people will tell us to build a system that will be good for them.

Monday, May 11, 2009

Kafka Couldn't Have Done Better

The New York Times, Monday May 11, 2009, page A1: Stephen Labaton's "Administration Will Strengthen Antitrust Rules." Page A11: Robert Pear's "Health Care Industry Is Said to Promise to Hold Down Costs Voluntarily." Page A21: Paul Krugman's "Harry, Louise and Barack."

The administration has made a grandiose threat to enforce antitrust rules "against corporations that use their market dominance to elbow out competitors, or to keep them from gaining market share." And then, with apparent administration encouragement representing a full-blown schizophrenic break, the big financial interests in healthcare ("doctors, hospitals, drug makers and insurance companies") have joined forces, out of the public eye (in Senator Kennedy's offices?), to exert their market dominance on the citizenry without any administrative recognition that this is insane. When the big players put their heads together, will they be more interested in diverting dollars to their corporate treasuries or in saving health care dollars while providing quantitatively higher quality health care? Were these the country club buddies of the bankers and financial people who just wrecked our economy, chanting "greed is good"?

Krugman describes his cynicism about the motives of these big money operatives. I'm not cynical, I just think the whole situation is sick.

Yesterday's blog illustrates how the money will be saved. And it bodes poorly for our families' health.

By the way, who is protecting the public?

Sunday, May 10, 2009

Response to "A Troubling Question"

On May 4, 2009, I posted a complex question which asked for my response. I asked for comments from readers but received none. Here are the facts presented:

"Patient: has worked in health care as an R.N. for 27 years; was required, by the employer to join a union for health care benefits; received great health benefits until a decline in health necessitated multiple transplants in the period of one year; maxed out the lifetime benefits allowed; desired to return to work but still owing much in medical expenses related to transplant; told by employer that because unionized no further benefits were allowed, whereas if not unionized benefits could be restored; back working and making a substantial salary once again; still no way to pay off former medical expenses; does not qualify for any "programs" to assist.
Double edged sword here? What is the answer for people like this who have worked, and paid into the system, and desire to keep working but for unforeseen circumstances have encountered medical costs that are way beyond reach?"

The general approach to issues such as this is to question every element of every bill as to accuracy, completeness, veracity, failure to record all payments, failure to pass on discounts to patients. Make no assumption that charges or payments are correct because they often are not.

Because I have retired from law practice, I cannot give specific advice to the questioner. However, I recommend that you contact Peter Liebold, the executive director of the American Health Lawyers Association (202-833-1100), and ask for the names of several attorneys in your area who are experts in health care law dealing with the issues you described. In addition, you can contact your local bar association, your state bar association or even the American Bar Association to learn the names of attorneys who may help you. You might find a competent health care attorney who would be willing to provide pro bono" services, though that is not very likely.

My own experience, when I sat on committees reviewing charges by hospitals and their business associates, physicians and other providers was that there were often major discrepancies between services and products actually rendered and listed, and what should have been charged and what was charged. And on the other side, there were discrepancies in insurance company payments. Some insurance payers got special discounts which were not always passed on to patients and their families, whose bills were improperly inflated as a result. So it might be worth your while to request that your union to which you have paid dues for years - at its expense - obtain an expert audit of all charges and payments in your complex situation. If the union won't do it, you may find free legal assistance organizations in your area who might advice you on obtaining an audit at no cost to you. Sometimes, a non-profit charitable association dealing with particular diseases may have resources, and you may wish to contact the organ transplant association dealing with your problem to ask their assistance in obtaining an audit.

There are laws which protect insurers and employers from the consequences of decisions which may be disadvantageous (or sometimes injurious) to employee patients and their families. But some of these employer/insurer protection laws may not apply to your situation, as a competent health law attorney can determine for you.

You and your attorney may be able to negotiate a fee reduction based upon your financial hardship if you were dealing with a non-profit transplant center, hospital, and providers. After all, such institutions obtain tax benefits for their charitable services and the Internal Revenue Service might be interested in your experience with an institution which did not fulfill its charitable obligations and played hard-ball with you.

Wednesday, May 6, 2009

The H1N1 Flu Involves More Than A Virus

The first section below provides useful United States Government information about the H1N1 flu virus. The second section below (or clicking the blog title above)provides information about haemophilus influenzae, a bacterial infection which may follow an apparently resolved influenza episode by a week or two and may have lethal consequences if not prophylaxed or treated appropriately.

1. U.S. Government Site:
"Given the current situation regarding the H1N1 Flu outbreak, we have compiled for your information a few resources to which you can refer if you have questions or are seeking updated information regarding the H1N1 virus. We encourage you to share this information with your partners and stakeholders. Para informacion sobre la influenza porcina en espanol, por favor vaya a http://www.cdc.gov/swineflu/espanol/

Remember to follow these actions suggested by the Centers for Disease Control and Prevention (CDC) that can help prevent the spread of germs that cause influenza. Take these steps to protect your health:

Cover your nose and mouth with a tissue when you cough or sneeze. Throw the tissue in the trash after you use it.
Wash your hands often with soap and water, especially after you cough or sneeze. Alcohol-based hand cleaners are also effective.
Avoid touching your eyes, nose or mouth. Germs spread this way.
Try to avoid close contact with sick people.
If you get sick with influenza, CDC recommends that you stay home from work or school and limit contact with others to keep from infecting them.

Additionally, below are a few links to valuable resources to keep you up to date on H1N1 Flu:

The CDC page containing the latest information about H1N1 Flu, including activities currently underway to deal with the situation, daily updates on affected areas and numbers of cases, and precautions you can take to protect yourself and your family: http://www.cdc.gov/swineflu/. You may also contact the CDC at 800-CDC-INFO (800-232-4636) English/Spanish TTY: (888) 232-6348, 24 Hours/Ever Day – cdcinfo@cdc.gov.
An HHS report, Home Health Care During an Influenza Pandemic: Issues and Resources, based on the findings of an expert panel meeting, including representatives of home health care, emergency and disaster planning, professional organizations and federal and state government agencies http://www.pandemicflu.gov/plan/healthcare/homehealth.html
A report published by Association for State and Territorial Health Officials (ASTHO), At Risk Populations and Pandemic Influenza: Planning Guidance for State, Territorial, Tribal, and Local Health Departments. http://www.astho.org/pubs/State_local_review_Final.pdf"

2. New York State Site
"Haemophilus lnfluenzae Type B (Hib, Haemophilus b)

Updated: September 2008

* "Haemophilus lnfluenzae Type B" is also available in Portable Document Format (PDF, 23KB, 2pg.)
* Meningitis por H. influenzae - Medline Plus Información de Salud para Usted

What is Haemophilus influenzae type b (Hib) disease?

Hib is a bacterial illness that can lead to a potentially deadly brain infection in young children. Hib may cause diseases such as meningitis (inflammation of the coverings of the brain and spinal column), bloodstream infections, pneumonia, arthritis and infections of other parts of the body.
Who gets Hib disease?

Hib disease can occur at any age. Before the development of a vaccine, Hib was the leading cause of bacterial meningitis among children less than five years of age. Since the introduction in 1988 and the widespread use of the Hib vaccine, the number of new cases of Hib disease in infants and young children decreased by 99 percent to fewer that one case per 100,000 children younger than five years of age. Now, Hib is seen more commonly in the elderly, unvaccinated or incompletely vaccinated children, and people with a weakened immune system.
How is Hib disease spread?

Hib disease may be transmitted through contact with mucus or droplets from the nose and throat of an infected person.
What are the symptoms of Hib disease?

Symptoms may include fever, lethargy, vomiting and a stiff neck. Other symptoms depend upon the part of the body affected.
How soon do symptoms appear?

The incubation period for Hib disease is unknown, but is probably less than one week.
What are the possible complications associated with Hib disease?

If Hib meningitis occurs, death occurs in one out of 20 children and permanent brain damage in ten to 30 percent of the survivors.
What is the treatment for Hib disease?

Antibiotics, such as cefotaxime, ceftriaxone, or ampicillin with chloramphenicol, are generally used to treat serious infections. Rifampin is used in some circumstances as preventive treatment for persons who have been exposed to Hib disease.
When and for how long is a person able to spread Hib disease?

The period of time a person is able to spread the disease varies. Unless treated, it may be transmitted for as long as the organism is present in the nose and throat, even after symptoms have disappeared.
Does past infection with Hib disease make a person immune?

Children who had Hib disease when younger than 24 months of age may be at risk of getting Hib disease again. Children and adults who had Hib disease at 24 months of age or older are likely to be immune.
Is there a vaccine for Hib disease?

There are currently several Hib vaccines licensed by the U. S. Food and Drug Administration for routine use in children. Immunization authorities recommend that all children be immunized with an approved Hib vaccine beginning at two months of age. Recommendations for scheduling of subsequent doses vary depending on the manufacturer. Therefore, it is important to consult with your physician.

Some older children and adults with special conditions are at an increased risk for infection with Hib and should be vaccinated if they were not vaccinated in childhood. These conditions include sickle cell disease, removal of the spleen, bone marrow transplant, cancer treatment with drugs that weaken the immune system, and human immunodeficiency virus (HIV).

In New York State, Hib vaccine is required for all children enrolled in pre-kindergarten programs.
What can be done to prevent the spread of Hib disease?

The single most important preventive measure is to maintain a high level of immunization in the community. Rifampin, an antibiotic, is used in some circumstances as preventive treatment for persons who have been exposed to Hib disease."

Tuesday, May 5, 2009

Your Dysfunctional Child May Be The One to Keep You Alive

A few years ago, I spoke to a senior center audience about advanced directives and was greeted with a laugh and knowing nods when I commented that it is the child with whom the parent has the most dysfunctional relationship who will insist that the dying suffering parent be kept alive. Choose your surrogate carefully, I said, and be certain that it is someone who both knows your wishes and will follow them.

Times have changed. The social situations in which surrogates and patient families confront hospitals, nursing staffs and physicians have become more complex. As our country becomes increasingly multi ethnic and multicultural, hospitals are confronted with new family relationships and cultural demands. In some cultures, experiencing pain and suffering is part of dying process, and those representing the dying patient may give greater value to these cultural or family norms, than to the suffering of the dying patient. Discussions focusing on avoiding resuscitation or mechanical life support may fail because family members will not accept the responsibility for making a decision which they or others might conclude caused or hastened a loved-one's death. Demands to perform additional or repetitive tests or to keep a patient alive to allow family members to assemble from far-off corners of the world may be made. In some cases, calls to physicians in another country are made, and the surrogates and families demand the services or treatments these physicians have suggested, whether or not these services or treatments are consistent with American standards of medical practice.

In this complex multicultural consumer health care environment, physicians become confused about their own responsibilities as they lose track of the primary but potentially short-lived relationship with the dying patient and listen to/focus on the entreaties, demands and threats of surrogates and families.

My take on this is: (1) the standard of practice is "generally accepted professional standards of practice in the community/United States"; and (2) professional responsibility focuses on what is best for the patient (and consistent with the patient's wishes), not on different cultural practices or family demands if these are inconsistent with community/American accepted standards.

Monday, May 4, 2009

A Troubling Question

To My Readers. Please read this disturbing e-mail I received, and give me your comments.

"Dear Dr. Kaplan
"While I could speak to many of your blog posts, I would like to present this situation for your response.
Patient: has worked in health care as an R.N. for 27 years; was required, by the employer to join a union for healthcare benefits; received great health benefits until a decline in health necessitated multiple transplants in the period of one year; maxed out the lifetime benefits allowed; desired to return to work but still owing much in medical expenses related to transplant; told by employer that because unionized no further benefits were allowed, whereas if not unionized benefits could be restored; back working and making a substantial salary once again; still no way to pay off former medical expenses; does not qualify for any "programs" to assist.
Double edged sword here? What is the answer for people like this who have worked, and paid into the system, and desire to keep working but for unforseen circumstances have encountered medical costs that are way beyond reach?
There must be a solution for others in this dilemma, would like to hear your opinion."

Sunday, May 3, 2009

Wilson Disease and Abnormal Copper Metabolism

I spent yesterday at a high-level Wilson Disease symposium sponsored by the Wilson Disease Association (I had served on the board for many years), California Pacific Medical Center and the American Liver Foundation which was attended by patients and their families, scientists, physicians and other health care personnel. Michael Schilsky,M.D., a national Wilson Disease expert from Yale, described diagnosis and clinical aspects of this condition, including elevations of liver, blood serum and urinary copper, decreased ceruloplasmin (a protein which moves copper throughout the body), abnormal liver function tests such as elevated bilirubin and INR (a measure of clotting), psychiatric symptoms, movement disorder and hemolytic anemia. Then Sihoun Han,M.D., Ph.D. now of Children's Hospital in Seattle Washington, provided a tour de force of the genetic changes which are found in Wilson Disease and the use of these mutations in diagnosis. Giuseppe Inesi, M.D., Ph.D. of California Pacific described his elegant research into the Copper ATPas Molecule and its mutations and Robert Wong, M.D., a transplant hepatologist at California Pacific described clinical research involving transplanted Wilson Disease patients. Catherine Frenette, M.D. of California Pacific discussed curative liver transplant for Wilson Disease and provided encouraging statistics for all hepatic transplants and finally, in a fast-paced and helpful talk, Mary Pasquali, R.D., M.S. of California Pacific described nutritional support for cirrhotic patients, including those for Wilson Disease, and post-transplant patients.

While Wilson Disease is rare (a speaker cited 30 patients per million), it is a disease which - if diagnosed early - can be treated so that the patient has a normal life and normal life expectancy. If diagnosed late, severe crippling neurologic disorders may develop, or fulminant or chronic liver failure may require liver transplant or the patient may die. A timely on-target diagnosis requires well-trained phsicians and teams and the use of sophisticated technology which has only recently become available.

Good medical care saves money. Early diagnosis and treatment will cost a few thousand dollars; late diagnosis with disability and a liver transplant will have costs approaching a million dollars.

Symposia, such as the one I attended yesterday, will be held by the Wilson Disease Association this year in various regions of the United States and will bring important education and competence to the field.

Friday, May 1, 2009

Has Congress Heard of "Evidence Based Medicine"?

The health care reform "point" people, Democratic Senators Max Baucus of Montana and Republican Charles Grassley of Iowa, have made several questionable proposals. These include supplementary payments to doctors who regularly exceed "national benchmarks" for care quality, bundling all services provided to a hospital patient (including such small items as nursing home care), a boost in payment to hospitals that provide superior care for heart attacks and failure, pneumonia and certain other conditions, and more money to doctors who hire nurses to manage follow-up care for Medicare patients post hospital-discharge with diabetes, asthma, depression and coronary artery disease. Harking back to the disastrous days of Health Systems Agencies ("HSAs") with an emphasis on saving money by inappropriate rationing of health care access to modern technology, Baucus and Grassley apparently also favor national standards for diagnostic imaging services.

The questions for the two senators include: (1) "what evidence supports the appropriateness of these proposals"? (2) What are the likely downside risks to their adoption? and (3) who will be among the health care casualties if these bureaucratically oriented proposals are adopted? What evidence is there that bureaucratic benchmarks for care and diagnostic procedures improve health care? Isn't there evidence already, that physicians who provide care to diabetics provide better care if they are not computer-dependent?

In this zero-sum era, adoption of these proposals will cause physicians, health care systems, and hospital managers to think hard about whether they wish to undertake the care of really sick patients or whether it would be smarter financially to dump these patients on their competitors or university centers. Medicare patients who are now having difficulty getting to see their physicians may find their situation deteriorating. But then again, death does put an end to complex really sick patients' health care costs, doesn't it?