As an example, the annual cost of effectively managing diabetes typically averages about $12,000, but can quickly approach $102,000 if it rages out of control and the patient experiences complications such as heart attack, stroke, poor vision, or limb amputation.

Right now, many of these chronic issues are considered “pre-existing conditions”, and can serve as the basis for an insurer to deny coverage. But starting in 2014, when the new federal health care law is expected to go into effect, insurers will no longer be able to do this. Ideally, this ultimately gives insurers incentive to make sure their current customers do not reach that 1%, and they are starting to implement ways to do that, such as providing additional means to help manage chronic conditions and provide wellness incentives. But they are also evaluating different ways of compensating physicians, such as paying them more to coordinate care and developing ways for them to share in savings achieved when a patient avoids a hospital admission through better treatment.

Regardless of what may happen over the next few years, however, one thing is clear: the current model of health care insurance is changing.

Guest Editor:  Dave Schlosser, Patien Navigator LLC

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CITN is a network of pioneering researchers in cancer immunotherapy from 27 top U.S. cancer centers and universities. Together, they work to identify the chemotherapeutic potential of agents with known and proven biologic function, and subsequently design and run early phase clinical trials to evaluate their ability to provoke an immune response in a way that can treat cancer. And they do this while combining academic peer-reviewed hypothesis-driven studies with the rigor and efficiency of industry trials.

The first trials will evaluate CP-870,893, a Pfizer-developed monoclonal antibody, as a presurgical treatment in patients with operable pancreatic cancer, and IL-15 (interleukin-15). IL-15 is being tested in human cancer patients for the first time this year as well in a study just launched that tests it as a treatment for melanoma and kidney cancer.

Immunotherapy has long been an area where researchers hoped to make progress.  This effort may open the door to new treatment options for these very difficult cancers.

Guest Editor:  Dave Schlosser, Patient Navigator LLC

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Each year, the American Society of Clinical Oncology conducts an independent review of advances in cancer research that have the greatest potential impact on patients’ lives. This year, Clinical Cancer Advances 2011 features 54 significant studies, including 12 that the report’s editors consider major advances.

This year’s Clinical Cancer Advances report also recaps the year’s most important cancer policy developments and ASCO policy initiatives that are likely to influence cancer care over the coming years. These include developments that could help to accelerate the pace of clinical cancer research progress and ensure access to quality cancer care for patients.

Anyone who is impacted by or interested in cancer research, treatments and care should look at this report.

This article and more can be read on the Patient Navigator December 2011 newsletter.

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It was written by a ten year old boy.

Depression feels like a fog

of invincible sadness has

been thrown out onto the world.

It smells like wet rotten eggs

that have been left out for the rats.

It’s blue like the feeling at a funeral.

It looks like a dark room with nothing

in it.   Depression kills like an angry

tiger in a jungle of sadness.  It sounds

like a roar of frustration boiling down

deep inside.   Depression crawls like a

baby that has given up the will to walk.

Depression is slow and scaly like an

old snake dying out.

Depression hurts everyone.

How sad that this boy could have such a significant insight into the world of the depressed mind at such a young and supposedly innocent age.   Whether he is experiencing depression himself, or seeing a family member struggle, it is hurting him, deeply.

Our words and actions, especially those unspoken or left undone, are absorbed by children.  Children observe and imitate from the time they are born.  It is their lifeline, their whole existence.  They have to understand the adults around them in order to survive.

With depression and anxiety so prevalent in our society, it is not surprising that a great number of young people report these  feelings.  Kidshealth.org has understandable explanations and examples of what childhood depression is and how it affects the lives of young people.

Although depression is a mental illness that is well treated with medication and/or cognitive therapy, there is still a stigma associated with depression in some circles.   Mental Health America offers a quick screening tool, but there are others that help people understand the symptoms and treatment options.

Where to find help and information:

National Institute of Mental Health

National Strategy for Suicide Prevention

National Mental Health Association

Depression and Bipolar Support Alliance

If depression is affecting your life, the life of a child you know, or someone you love, help is available.  You can reach out and make a difference.

Submitted by guest editor Debora Harvey, Patient Navigator LLC

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I went to pick up my hearing aids yesterday.  These are fairly new, only a few months old, yet I have had to send them back to the manufacturer twice so far, and I am not confident that they will work well even now.  The irony is that I paid $3,000 out of pocket for these assistance devices.  They are not covered by my health insurance.  I do have a “discount program” that enables me to go to a provider that has an agreement with my insurance provider, who supposedly charges me less than the current market rate for these devices.  Unfortunately, I am much less than satisfied by both the quality of the hearing aids, and the competence of the “audiological specialist” to whom my insurance company has steered me.

I was in my twenties when diagnosed with a hearing loss significant enough to need amplification. I resisted the need for hearing aids, but the doctor explained to me that, unless I could get the sounds to my brain, my brain would slowly lose the ability to recognize sounds and speech.  Even if my hearing were miraculously restored, I would be unable to understand the words people spoke.

According to the American Speech Language Hearing Association, hearing loss is the number one birth defect in the United States.  Twenty percent of children have some sort of hearing or speech disorder.  Half of the 28 million Americans with a hearing disability are under the age of 50.

Among other statistics, the National Institute on Deafness and Other Communication Disorders (NIDCD) reports that:

• Approximately 17 percent (36 million) of American adults report some degree of hearing loss.
• There is a strong relationship between age and reported hearing loss: 18 percent of American adults 45-64 years old, 30 percent of adults 65-74 years old, and 47 percent of adults 75 years old or older have a hearing impairment.
• About 2 to 3 out of every 1,000 children in the United States are born deaf or hard-of-hearing. Nine out of every 10 children who are born deaf are born to parents who can hear.

Yet many insurance companies significant limit coverage of audiological services, if indeed they cover them at all.   Medicare, the primary insurance for millions of older Americans, does not cover hearing aids or eyeglasses, basic needs for people who are losing the acuity of sight and hearing as they get older.

It is a matter of economics.  In order to keep private or group premiums affordable for individuals or employers, these type of assistance devices are excluded from coverage.  If Medicare were to include this coverage, its budget would be hundreds of millions of dollars more every year; dollars found in tax increases.

ASHA has an active advocacy program working to improve disability benefits in general, especially those relating to hearing disabilities.   Take a look if you or someone you know needs help.

To learn more about hearing loss and other communication disorders, visit the NIDCD Health Information site.

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One important new area of research is called autophagy.  Haven’t heard of it?  You will.  Here is a simplified explanation.  When cancer cells are mired deep in the core of a tumor, they have limited access to oxygen, growth factors and nutrients from the blood vessels that feed the tumor.  So when things get tough for cancer cells, they start eating themselves to get what they need to survive.  This is autophagy.

Normal cells rely on autophagy to maintain a balance or during times of stress. Cancer cells do too, not just to survive in the inhospitable environment of a tumor, but also to ward off the effects of chemotherapy and radiation.

When autophagy is activated, (when the “self-cannibalism” begins) it is “an intrinsic cell-survival mechanism that cancer cells turn on to recoup essential building blocks when they’re being poisoned or irradiated,” according to Dr. John Cleveland of The Scripps Research Institute.

Therefore, a greater understanding autophagy’s role in cancer has led researchers to investigate whether blocking autophagy can make cancer treatments more effective, cutting off what amounts to an important escape route.

The research is in early stages and there may be substantial differences in the autophagy activity in different cancer types, or even from tumor to tumor.  Still, according to Dr. Ravi Amaravadi from the University of Pennsylvania Abramson Cancer Center, the available evidence suggests that autophagy “seems to be a process that could be important in many cancers.”

A number of clinical trials testing autophagy inhibition are actively recruiting patients with a variety of cancers, including breast, colorectal, myeloma, and chronic lymphocytic leukemia.  They are testing an off-patent drug called hydroxychloroquine, or HCQ.  The largest trial to date involving HCQ is for patients with newly diagnosed glioblastoma multiforme, a brain cancer. There is also a Phase I/II trial testing authophagy inhibition in patients with stage II or III pancreatic cancer.

The September 7, 2010 issue of the National Cancer Institute Bulletin contains the complete article from which this summary is drawn.  To dig deeper, consult the American Society of Clinical Oncology’s work in this area.

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The article cites a study released in 2006 study by the U.S. Department of Education that found that 36 percent of adults have only basic or below-basic skills for dealing with health material.  This means that 90 million Americans can understand discharge instructions written only at a fifth-grade level or lower. About 52 percent had intermediate skills: they could figure out what time a medication should be taken if the label says “take two hours after eating.”

The remaining 12 percent were deemed proficient because they could search a complex document and find the information necessary to define a medical term.  Adults who were ages 65 and older had lower average health literacy than adults in younger age groups.  Less educated and minority groups generally had lower levels of health literacy.

The Surgeon General of the United States has also tackled this subject.  Because only 12% of Americans have proficient health literacy skills, the majority of adults may have difficulty completing routine health tasks like understanding discharge instructions or diabetes care. There is a strong, independent association between health literacy and health outcomes. These outcomes include emergency department use, hospitalization, self-reported physical health, and mortality.

Interventions to mitigate the effects of low literacy in patients with chronic
conditions have been shown to improve health outcomes. In some cases, the interventions appear to be more effective for low literacy users compared with higher literacy users.  A fascinating January 2011 article in the New Yorker by Dr. Atul Gawande documents this point perfectly.

The Surgeon General concludes:

• First, public health professionals must provide clear, understandable, science-based health information to the American people.  In the absence of clear communication and access to services, we cannot expect people to adopt the health behaviors we champion.

• Second, the promises of medical research, health information technology, and advances in health care delivery cannot be realized without also addressing health literacy.

• Third, we need to look at health literacy in the context of large systems – social, cultural, education and the public health system.  Limited health literacy is not an individual deficit but a systematic problem that should be addressed by ensuring the health care and health information systems are aligned the needs of the public.

In an era when individuals are increasingly required to fend for themselves, health literacy is indeed a public policy issue.  Patient navigators and advocates obviously fulfill a vital need here.  Indeed, we here at Patient Navigator help to educate and empower our clients.  But the problem is massive and the resources small; there is no easy answer.

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Seniors are affected by several of the provisions. They will get big discounts on prescription drugs.  Prescription drug costs (Medicare Part D) could go down by $700 for a typical Medicare beneficiary in 2011.

Several provisions of the law promote prevention of disease, especially for seniors. Medicare enrollees will be able to get many preventive health services – such as vaccinations and cancer screenings - for free starting in January.

Medicare is increasing up payments for primary care by 10 percent from Jan. 1 through the end of 2015. It’s an incentive for doctors and others who specialize in primary care – including nurses, nurse practitioners and physician assistants – to see the growing numbers of seniors and disabled people covered by the program

Beginning soon after the Food and Drug Administration finalizes rules  in 2011, chain restaurants with 20 or more locations, and owners of 20 or more vending machines, will have to display calorie and fat information on menus, menu boards and drive-thru signs.

Consumers with flexible spending accounts (FSAs), in which pre-tax income can be used for medical purchases, can no longer spend the money on over-the-counter drugs, including ones that treat fevers or allergies and acne, unless they have a doctor’s prescription. The new restrictions, which lawmakers included in the health overhaul to raise more revenue, also apply to health reimbursement arrangements (HRAs), health savings accounts (HSAs) and Archer medical savings accounts (MSAs).

Starting this year, health insurers must spend at least 80 percent of their premiums on medical care, or face the possibility of giving rebates to consumers.  (Editorial note:  don’t hold your breath for any rebates).

For a useful timeline of all the changes coming this year, check the Kaiser Family Foundation website. The U.S. Government’s timeline of what’s changing and when is also helpful.  Bottom line:  Stay Informed!

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In this blog, we have written often about pain management because so many patients come to us desperate for help.  Pain seems to be one of the most misunderstood aspects of patient care.  A recent New York Times article sparked a lively debate among fellow advocates about the failure of most doctors to understand pain and to treat it appropriately.   I invited Ken Schueler to share his thoughts as guest editor today.

“I had the privilege of participating some years ago in Dr. Russell Portenoy’s successful initiatives in making “pain” the fifth vital sign.  Dr. Portenoy is considered the father of the Pain Management movement in the U.S.  He is at Beth Israel Hospital in New York.

There are multiple problems with regard to pain management in the United States.  First, we have a puritanical history that has contempt for suffering which can’t be measured scientifically or associated with an organic disease (e.g.,  Reflex Sympathetic Dystrophy, also known as Complex Regional Pain Syndrome).

In other words, with the exception of some investigational functional MRI’s, doctors can’t verify a patient’s subjective report of pain.  So they begin by under-dosing a patient’s baseline pain, allowing continual breakthrough pain. Gradually they will dose to effect unless they dismiss the patient and refer them to the psychiatric service believing the patient is malingering or that “it’s all in your head.”

Second, for many years, pain management physicians had no Board Certification; they were composed of neurologists and anesthesiologists.  Now, there is the American Board of Pain Medicine which is fostering education among all physicians.

Third, there is an enormous misunderstanding and lack of knowledge about addiction and three characteristics of pain management:

1) Dependency – if you suddenly stop taking an opioid you’ll go into withdrawal.   Note:  one wouldn’t say that a diabetic is addicted to insulin,  one would say a diabetic is dependent on insulin.  Therefore,  dependency is NOT addiction;

2) Tolerance – needing a higher dose to achieve the same effect, as often happens in advanced cancer:  that is NOT addiction;

3) Addiction is properly defined as “drug craving behavior where a patient is obsessively seeking to score opioid drugs through doctor shopping (paying cash) and even forging prescriptions.”

For many years I was on a list service with Dr. Russell Portenoy, and the stories of suicides by pain patients unable to receive adequate treatment were/are heart-breaking.   The Drug Enforcement Agency’s witch hunt tactics contributed to these suicides.  There is an irony that the most widely used addictive substance in the U.S., tobacco, is not even FDA regulated.

Many patients are not sufficiently educated to know that once there is breakthrough of their baseline pain(managed with long-acting opioids), it make take considerable time to get the plasma concentration high enough with a short acting opioid to get the pain under control. Often, good pain management Nurse Practitioners are the best educators for pain patients.

Chronic pain requiring an opioid cannot be managed solely with acupuncture, but we know from research that acupuncture stimulates the body’s own endogenous opioid system, such that it may be possible to reduce the dose levels of opioids. One problem here is that insurance companies limit the number of acupuncture sessions, just as they do with physical therapy sessions. Fortunately, a number of compassionate acupuncturists have lowered their prices for pain patients.

I’ve often said that if all medical services were run like hospice we would have a much more humane health care system, notwithstanding the abhorrent insurance system we have. You never see the DEA harass a hospice physician over their opioid prescriptions because admission to hospice requires the primary physician’s certification that the patient has less than six months to live.

Many years ago I did a study of “physicians who became patients.”  Several observations:  if the physicians experienced pain they become much more sensitive to their patient’s pleas for better pain management.  Second, if they had a serious illness or surgery, their colleagues were less likely to refer new patients to them, in other words, once you’re seriously ill, you diminish in value and the institutionalized impact of this on patients is seen when a doctor making rounds with residents says, “that’s the pancreatic”- NOT SEEING THE WHOLE PERSON.

For other posts on pain, please visit:

Understanding Palliative Care

The Face of Pain

Back Pain Help Comes in Many Forms

Guest Editor:  Ken Schueler

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Rising Costs of Cancer Care vs. Cancer Prevention

What’s on the Health Reform Horizon?

Food Science – Part 5

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