The genie I dreamt of: A very good year for public health

On Dec. 31, 2008, imagine that a genie told you that in a year's time, it would be more likely than not that people seeking health insurance would soon receive insurance even if they had a serious pre-existing condition. And that 31,000,000 more Americans would soon have health insurance. And that in the meantime, if someone was laid off and at risk of losing the insurance they had through their employer, they would be able to keep that COBRA coverage for a much longer period. And that this would be produced via the leadership of an African-American president, without Teddy Kennedy playing a major role.

You would have thought, I'm dreaming of that genie.

Voila! As the Zionists said, If you will it, it is no dream.

Happy New Year!

Don't ever come back: Barriers to palliative care

Dr. Bruce Ferrell, who helps lead the palliative care program at UCLA Medical Center, recalls a patient two years ago who got a liver transplant but developed serious complications afterward and remained in the hospital for a year. "He had never ever been told that he would have to live with a ventilator and dialysis," Dr. Ferrell said. "He was never told that this was as good as it's going to get."

Dr. Ferrell talked with the patient about whether he might want to leave the intensive care unit (ICU) to go home and receive hospice care. But when the surgeon overseeing the case found out, he was furious.

"We do not use the h-word [hospice] on my patients," the surgeon told Dr. Ferrell. "Don't ever come back."

The patient chose to leave.

The UCLA Medical Center consistently ranks as one of the most expensive places in the U.S. to get end-of-life care, though its patients' outcomes are similar to hospitals that spend much less.

Advice to patients near the end of life: Even when in the hospital, you can insist on considering hospice care.

Read a story about hospice care. Thanks to Reed Abelson for the source story in today's New York Times.

She'll pull a Sori on him: Accompaniment by community health workers

Dr. Heidi Behforouz's story on Sori and Maria:
Sori is one of my PACT [Prevention and Access to Care and Treatment] community health workers. Sori told the story of Maria. A young woman with significant mental illness, and a cocaine user, Maria was referred to PACT with her immune system ravaged by uncontrolled HIV. For four years, Sori rode life's ups and downs with Maria, always encouraging, never forcing. Yet she was never able to help Maria consistently take her medications. Then one day, something clicked. Maria began taking her pills. She's now getting stronger and has voluntarily taken on the role of accompanying her boyfriend, showing up in his room with a cup of coffee in one hand and his psych pills in another, telling him that if he doesn't get up and take his meds, she is going to "pull a Sori on him."

With the power of such accompaniment, we have documented significant clinical improvement in the majority of our patients, and reduced preventable hospitalizations by 40%. We have been creating – to borrow a phrase – patient-centered medical homes.

Much of the care is being delivered by paraprofessionals who have not been extensively schooled in the biomedical model and don't practice office-based care. Their schooling and expertise is in the art and science of "accompaniment" – you walk with the patient, not behind or in front of her, lending solidarity, a shoulder, a sounding board, a word of counsel or caution. Empowering, not enabling. Together facing and managing challenges that neither you nor they can fix – poverty, racism, illiteracy, social isolation – so that you can help them swallow their pills every day, get to their appointments on time, and renew their Medicaid applications.

Advice to people with chronic illness: Find a Sori.

Read another story about patient partnership. Thanks to Dr. Heidi Behforouz for her source story in today's Boston Globe.

The Senate's Christmas gift for families like the Mains: Pre-existing conditions

The Yes from Senator Ben Nelson is the crucial 60th vote in favor of the health reform bill. That's a major milestone toward the bill's passage.

On this morning's Meet the Press TV show, Sen. Nelson said that the early benefits of the bill, if it passes, will prevent insurance companies from denying coverage to children for their pre-existing conditions.

Who'll benefit? Hesper Main offers her example:
I too am a victim of Mega Life. Months before my son was diagnosed with leukemia we decided that we had let the children go without insurance for too long. I found an inexpensive insurance for the self-employed and called. The woman who set up our policy was a quick speaking, spastic, all over the place mess. She explained to us how wonderful a hospital-based plan was and my husband and I were not well educated in health insurance to doubt what she was saying. Now, the bills are so high that we are going to have to file bankruptcy. The woman at Mega Life completely misrepresented her company and duped us into purchasing our policy. My son is healthy and in remission, even though we are struggling with getting these bills paid. The doctors and hospital have never denied my son care. Thank God! I shudder to think of how many people out there are going through the same thing that we are.

Read another story about an insurer’s denial of a pre-existing condition. Thanks to the bloggers at Health Care for All for posting her comment, reprinted here.

I'm an artichoke: Empowering people with serious disabilities

Dr. David Spiegel's story on Ed Roberts:
Ed Roberts, was transformed in 48 hours from star high school baseball player to permanent quadriplegic on a respirator by the polio virus. He has come to lead a remarkably independent and full life despite this, rising to become the head of the World Institute of Disability in Berkeley, California. After several years of deep despair, with his mother’s help, he applied to the Department of Rehabilitation of the State of California for entrance into its training program. He was rejected, with the comment hat he was "unrehabilitatable." He went to school anyway, gained considerable experience, and 2 years later became the commissioner of the same department! He is an energetic, outgoing man, who seems to project himself beyond his wheelchair, attendant, and breathing apparatus. He took steps to see that the disabled had control over those who helped them – making them, rather than the state, the primary employers. And he rails against the exclusion the disabled feel. (He hates the term "handicapped" – it comes from being "cap in hand.") Looking up at a roomful of bright young Stanford medical students, he said: "I think of you as temporarily able bodied." By mobilizing the disabled to share and work together, he was able to redefine the world of the able-bodied, and change it. "The doctors told my mother that I would be a vegetable," Ed commented. This was quite a mistake – the poliomyelitis virus attacks motor neurons, not the part of the brain that thinks. "But it turns out they were right – I am. I'm an artichoke: prickly on the outside, with a big heart in the middle."

Ed's transformation from a socially isolated, depressed, despairing young man who had lost "everything" into an effective, vital man who boasts about the quality of his life despite his serious disability, came in part through his contact with other people with disabilities. Through them he learned that he did not deserve what had happened to him, that he was not less of a person for it, that he could find other ways to rebuild his life. This resulted not from denying nor hiding from his disability, but rather from making it the starting point of new relationships and a new perspective on life. People with life-threatening illness do the same thing every day, and many more could, if they stopped suffering in silence.

Advice: Live like Ed.

Read another story about a disabled athlete.

Thanks to Dr. David Spiegel for the source – the book "Living Beyond Limits."

They couldn't offer a life-saving donation: Polycystic kidney disease as a pre-existing condition

David Waddington is a 58-year-old wine retailer in Dallas. He has polycystic kidney disease, a genetic disorder that leads to kidney failure. First he lost one kidney, then the other. A year ago he was on dialysis and desperately needed a new kidney. Doctors explained that the best match – the one least likely to be rejected – would perhaps come from his two sons, aged 27 and 29.

The two sons each had a 50% chance of inheriting PKD. If pre-donation testing revealed that either one had PKD, he might never be able to get health insurance: the pre-existing condition could make him uninsurable. As a result, their doctors had advised against their getting tested.

So "at the time David needed a transplant, the people closest to him couldn't even offer a lifesaving donation – for insurance reasons," David's wife Susan said.

Read another story about a pre-existing condition. Thanks to Nicholas Kristof for his source column the New York Times in October.

Advice: Tell your senator just how important it is that health reform include coverage of pre-existing conditions.

In my son's best interest: Over-prescribing of anti-psychotic drugs

Suzanne Joblonski's story:
Re "Poor Children Likelier to Get Antipsychotics," published in the New York Times on Dec. 12:

I am the mother of a teenage boy who received a diagnosis of attention deficit disorder and oppositional defiant disorder eight years ago and was prescribed antipsychotic medication. Throughout the years, we have visited no fewer than five psychiatrists and countless other therapists.

I would often question why my son was prescribed medications (at one point three at a time) that failed to do as they promised. For example, the ones that were designed to help him sleep at night did the reverse, and the ones to keep him awake made him lethargic.

I decided that it was in my son's best interest to take a break from the weekly therapy and daily medication. Surprisingly, he functioned much better: His sleeping patterns and appetite improved. He is now back on medication, but with new therapists and with the parents' considerations in mind.

Families like ours are often duped into believing that there aren't options other than medication, or should we refuse to comply, charges of neglect could be brought.

Advice to parents: If your child's medications don’t have the desired effects, talk to the doctor about your alternatives.

Read another story on use of anti-psychotic drugs.

Thanks to Suzanne for her source letter to the editor, reprinted from yesterday's New York Times.

By necessity, great communicators: How doctors address their patients

Dr. Anne Marie Valinoti's story:
A physician friend of mine made the mistake of calling a woman of a certain age by her first name during a visit. "That's Mrs. White, thank you," she told him, icily.

"I never forgot that one," he said, remembering how he had sheepishly finished her exam.

But most patients, especially those under age 65, prefer doctors to use their first name, according to a study in the British Medical Journal. Since patients' preferences vary greatly, doctors should ask; they shouldn't assume.

Great primary care doctors are, by necessity, great communicators. All communication starts with what we call each other.

Advice: If you don't want your doctor to call you by your first name, tell them, or their office manager.

Read a story about excellent physician-patient communication. Thanks to Dr. Valinoti for the source story in today's New York Times.

I have no options: The public option for chronic pancreatitis

Robin's story:
To claim that the passage of a comprehensive health care bill will result 
in rationing is just plain ignorant. You ignore that many of us are 
uninsurable; I struggle with health issues post TP/IAT (pancreatic surgery with islet cell transfer like I had), yet must work, as my health 
insurance is supplied through my self-employment...and I pay $22,000.00 
per year for health care coverage, with a deductible.

I have no options, I cannot change or reduce my plan without fear of being 
reviewed again by underwriters and rejected. 

Don't you understand that without protection from a government plan, many 
of us would be blacklisted from group or individual health insurance because 
of our disease? 

Don't you understand that the insurance companies have the right (NOW) to 
deny you coverage because of "pre-existing conditions" clauses? 

Go to a website and at least read the health plan that was approved by the 
House...it is sensible, and it may provide affordable coverage to persons 
afflicted with chronic illness who otherwise would be uninsurable.



It is frustrating that there are those out there who really believe the 
NEGATIVE press that has been surreptitiously funded by health insurance 
companies and big PHARMA, why...because the government plan will cost them $!!
 
We with Chronic Pancreatitis are the outcasts of the medical profession, we are constant and 
expensive consumers of the system, a system that is designed to deny us 
benefits. We should all be writing letters to our respective congressional 
representatives to support national health care. 

The people on this listserv should be jumping up and down and trying to 
educate others who don't suffer from the stigma of a chronic illness about 
how necessary the regulation of our insurance and health industries is...to 
give those of us who fall into an "unacceptable risk pool" an opportunity to 
obtain health insurance without prejudice and the almost certain risk of 
denial once you carry a CP diagnosis.
 -
Robin H. (CA)


Advice: Read another story about the difficulty of getting health insurance with a major pre-existing condition. Thanks to Robin, and Carolyn Bloom, for the source posting to pancreatitis@YahooGroups.

There can be a big payback: Testimony on Massachusetts state funding for patient safety

This was my testimony today on state funding:

Secretary Bigby, Commissioner Auerbach, and other executives,

Thank you for the opportunity to testify.

I'm Ken Farbstein, President of the Consumer Health Quality Council of Health Care for All. We'll submit more formal written testimony to add to this personal oral testimony.

Our Council is mostly people who had a serious medical error in their own family. At our last meeting, my friend Kim came and told us about his mother's death from a hospital acquired infection. (I'm glad the DPH is reporting those, as that can persuade hospitals to become safer.) And we heard from another man, Lee, whose girlfriend died needlessly in a hospital. If the Rapid Response Methods section of the law had been in place then, and if he knew about it, she might well be alive today. (I'm glad that DPH can collect information about hospitals' use of Rapid Response Methods.) One of our long-time members didn't come to our last meeting, because her new leg prosthesis was still uncomfortable. She needed one after more than 20 operations following a very serious hospital-acquired infection.

Yesterday a work group of our Council reviewed the hospitals' plans for their Patient and Family Advisory Councils, required by Chapter 305. We were happy to learn that consumers on one hospital's advisory council got the hospital to extend visiting hours to 7x24, so family members can be with their loved ones when they're most vulnerable and afraid. If all hospitals plan and conduct these advisory councils, a lot more good ideas like that will become reality. If DPH can help make those ideas known – IF they have money for someone to look, and discover them, so much the better.

I firmly believe that reporting errors keeps providers more mindful of the need to make their systems safer. It doesn't take much of DPH's time to gather and report that, and there can be a big payback. Of course, DPH needs the funding to keep doing that. I hope you give them, and the Betsy Lehman Center, what they need.

Advice: It's a citizen's job to keep his mouth open.

Read another story about Chapter 305 testimony.