A Healthy Piece of My Mind

Reforming Health Care

2012-01-16T11:25:00.000-08:00

Afraid you or your loved ones might somedayface a government death panel? Forty percent of Americans still believe in it.Sixty percent think healthcare reform will create a government run health plan. (KaiserFamily Foundation)

I’m not an expert, but I know these are mythsabout healthcare reform. I joined about 100 others this week to hear JonathanGruber, one of its architects, explain the national healthcare reformlegislation known as the Affordable CareAct (ACA). Gruber has recently published the comic book “HealthCare Reform:What it is, Why it’s Necessary, How it Works.”

Gruber said he decided to publish inthis illustrated form after his 17-year-old son and his publisher persuadedhim. “When you’re on a plane and they want to teach you what to do in case ofaccident, they hand you a graphic. I think it was the right call,” he said.

Few if any in this San Franciscoaudience needed to be convinced that reform is necessary. But questions remainabout how it will work. Economists likeGruber define the primary problem as the soaring rate of increase in healthcareexpenditures. The Affordable CareAct includes policies to slow the growth of healthcare spending:

fightingfraud

$33.7billion per year in combined federal and State funds is paid inappropriatelythrough Medicaid (HHS)

bettercoordination of care
preventingdisease and illness before they happen
creatinga new state-based insurance marketplace

About 72 percent of surveyedAmericans know that subsidies will be available to help low and moderate incomecitizens purchase the (mandated) health insurance.

Yeteven Gruber admits that “cost control is too hard for us to know what to doright now” because of both scientific and political realities. To make progress toward true cost control thebill funds pilot projects and encourages studies such as head-to-headcomparative effectiveness examinations of treatment options. In thesemi-regulated world of free market pharmaceuticals, comparative effectivenessis rarely studied.

Gruber’sentertaining presentation lasted precisely one hour, including audiencequestions. For further information, he frequently referred the audience to thesite of the Massachusettshealth insurance exchange. His book refers readers to The Kaiser Family Foundation, Commonwealth Fundand US Department of Health and Human Services: www.healthcare.gov.

Less radiation therapy for breast cancer in 2012?

2011-12-21T11:35:00.000-08:00

Agenetic test can help women with “stage zero” breast cancer avoid radiationtherapy.

Some of the best news to come out of the San Antonio Breast Cancer Symposium earlier this month was this: researchers have validated an expanded use for the existing Oncotype Dx test.

The test was able to predict whether ductalcarcinoma in situ – sometimes known as stage zero cancer – islikely to recur. Since about half ofrecurrences are more serious, most women are treated with radiation therapy.

DCIS - also known as stage zero breast cancer - represents an increasing share of new diagnoses.The test "could help doctors better judge which women diagnosed with DCIS are at high risk for recurrence or an invasive breast cancer diagnosis in the future and would benefit from radiation therapy after surgery," according to breastcancer.org .

The test may be available to doctors as early as next week.

"Using a molecular-based assay, we have successfully identified patients at higher risk for recurrence and patients at lower risk," said Principal Investigator Lawrence J. Solin, MD, of Albert Einstein Medical Center in Philadelphia. This is an important advance for women with newly diagnosed DCIS. By predicting individual risk, physicians can provide a more tailored treatment program for each patient."

See my picks for top cancer stories of 2011

Open Letter to My Friend Who Was Recently Diagnosed with Cancer

2011-11-22T20:29:00.001-08:00

Dear Jane

I'm so sorry to hear you were diagnosed with breast cancer. You've joined that club that keeps growing too fast! Help is available, including but not limited to the following:

Information

Some people try to become cancer experts whenthey get a diagnosis; some prefer tohave only actionable information. But everybody has to make treatment decisions. Ifyou’re like most people you will rely on the strength of evidence, modified byyour own beliefs and flavored by the way in which the information is conveyed.

I know you're able to understand complex data but please be gentle with yourself if the stress of the diagnosis temporarily affects your ability to think clearly. I'd be happy to help research your options or even just listen to you think out loud about them.

The National Comprehensive Cancer Network publishes its clinical practice guidelines online; an excellent place to start. For less technical info, breastcancer.org and Association of Cancer Online Resources have moderated online communities where patients share their experiences.

Emotional Support

Your friends want to – and can – help somehow or other. The samegoes for your family, colleagues, neighbors, faith community, socialnetwork and the other people at the dog park. But it's your choice how many people you share your story with.

I know you want to keep alow profile for now, and I respect that. Consider picking a liaison who can help control the flow of information, casseroles and teddy bears. She can send updates to an email list, or call just the friends you've directed her to.

The most important thing is that you do not haveto worry about anybody else's feelings right now. It's all about you!

Practical Support

It’s just so inconvenient to have cancer ;) There’s notherapeutic benefit for “toughing it out,” minimizing the discomfort orignoring your daily needs. Help is available, sometimes from surprising places: for example,the “Road to Recovery” program can drive you to treatment and back.

Keeping track of the insurance and financial data is necessary but can be a burden. You might ask a trusted friend for help. The American Society of Clinical Oncology offers suggestions about how to trackboth your clinical and medical insurance records.

Treatment means teaming up with a group of providers, and they’re human so mistakes can happen.The federal Agencyfor Healthcare Research and Quality has advice about the best ways to communicate with your healthcare providers. Taking along someone who can take notes and ask questions during appointments can help protect you from bad outcomes.

Both research and personal experience have taught me whatit means to get the right help in the right way at the right time. Wishing you that kind of help, plus health and long life,

- Eve

Exploring How We Use the Internet for Health Research

2011-11-14T11:51:00.000-08:00

I don't have much commentary to add because:

I have confidence in this source
the format is pretty easy to understand

So take a look at the Path of the Blue Eye's infographic about "epatients" and tell me what you think!

Hugo and his Defribillator

2011-10-02T09:52:00.000-07:00

I first met Hugo Campos last year and I soon learned his story, but honestly? I thought maybe he was a bit on the fringe. I was wrong. This year we worked together to introduce patient voices into two conferences: Health 2.0 and Medicine 2.0. I came to know the tall, handsome man -- who appears quite healthy -- and he's remarkable. When the FDA held public hearings last month about medical devices, Hugo managed to be added to the agenda.

Thank goodness! With his permission, his testimony appears below. I believe it speaks for itself (emphasis and hyperlinks mine).

~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~~ ~~~~~~~~ ~~~~~~~~~

Good morning. Thank you for the opportunity to be here.

My name is Hugo Campos and I am a heart patient
living with an implantable cardiac defibrillator.

implantable coronary defibrillator (ICD)

Each year, hundreds of thousands of Americans
are implanted with pacemakers, loop recorders and cardiac
defibrillators like mine.

However, not a single one of these patients has access to the wealth of personalized data that is continuously collected by their implantable devices.

It is time for us to change this.

Pacemakers and ICDs are small, battery-powered,
electrical impulse generators that are implanted in
patients with slow heart beats or who are at risk of
sudden cardiac arrest.

In addition to providing life-saving therapy, these medical
devices collect and store advanced diagnostic information
pertaining to their normal function and a patient’s clinical
status. This information is transmitted to a secure and
private network owned by the manufacturer of the device.

Some of the data collected is made available to clinicians
through a secure Web site, enabling them the convenience
of monitoring patients without the need for in-office visits.
However, this data is not made available to the patient
who originates it.

Studies have shown that remotely monitored patients
experience a significant reduction in time from
clinical event to clinical decision and also benefit from
shorter hospital stays and reduced costs per
hospitalization.

This clearly makes the point that access to information
saves lives and money.

Yet, even in light of such evidence, patients continue to be
denied the right to access such useful and incredibly rich
data about their bodies.

The main obstacle, in my view, has been the Cardiac
Rhythm Management industry itself, which claims that a
pacemaker or defibrillator is put into a patient’s body for
the therapy it delivers, not for the information it gathers,
and that making this data available to patients does not fit
their business model.

The types of information collected by a modern ICD, for
example, vary from trivial to potentially critical. Among
other things, the device monitors its own battery voltage,
the amount of time it takes to deliver a life-saving shock,
collects and stores intracardiac electrograms, and monitors
a patient’s heart rhythm, daily activity, arrhythmia
episodes, and even the build-up of fluid in the lungs —
which is critical to patients dealing with congestive heart
failure.

In addition, patients who are at risk for atrial fibrillation and atrial flutter have a higher propensity for stroke and heart failure. Atrial arrhythmias can also cause the ICD to deliver inappropriate shocks. So, rapid patient awareness of atrial fibrillation is crucial for those at risk.

Access to our data can do more than just help patients take
control of our disease. It may also help with timely
identification of device-related malfunctions, and
ultimately, contribute to better patient engagement and
improved health outcomes.

Knowledge is power. And a patient privy to his data is an
empowered partner in his own health and healthcare.
Access to my device’s data can help me track, understand
and manage my condition better, become more active in my care, and work more effectively with my providers.

I rely on the FDA to protect me. And I need the FDA to
stand with me in this quest for openness, access and
transparency.

In the spirit of the new rules proposed last week by Health
and Human Services Secretary, Kathleen Sebelius, that
strengthen patients’ rights to access their own laboratory
test results directly from labs, I would like to ask the FDA
to follow suit and publicly declare that patients also have
the right to the raw data collected and stored by the
manufacturers of their implantable devices.

I have the right and the responsibility to care for myself,
but cannot do so without information. It is time to fix this
and put patients and our families at the center of our own
care. And I call on the FDA to help us get there.

Thank you.

May the Road Rise Up to Meet You - and Your Walker

2011-09-15T20:55:00.000-07:00

I'm doing my best to advocate for my aging Dad as he navigates the healthcare system. He may have reservations about becoming an epatient but he appreciates it when I advocate for him -- most of the time!

I've just returned from visiting him, now @11 months post-op and still dealing with surgical sequelae. For my own peace of mind I watched closely as he negotiated ADLs.

As was the case in 2010, I was caring for dad and simultaneously preparing for patient advocacy conferences. I am lucky and grateful to be attending both Medicine 2.0 and Health 2.0 (particularly, the Patients 2.0 prequel).

In my blog post last year I cataloged frustrating issues in his care. I posted again after he was diagnosed with a surgical site MRSA infection, though I skirted the issue of specifically identifying him.

Now Dad sleeps and eats well, follows the news and discusses liberal politics passionately with his friends, enjoys film and theater and reading serious works of historical research on his Kindle. He also works hard at physical therapy. He has great resilience and good strength and energy. But he has been left with that nasty quality of life diminisher: limited mobility.

I'm glad I could provide some practical support for Dad like making phone calls to get a prescription refilled and driving him to both a medical appointment and a discussion group. But we have -

Bigger Issues

While I give props to Elizabeth Cohen, her mom was apparently willing to move over and let Cohen drive (so to speak). The Harrises have perhaps more complicated family dynamics and no rule book for how to sort them out. Not even family precedent, even though my mom died 20 years ago of cancer.

We grapple with things like:

How to support his independence when faced with evidence that his decisions may not be so good? (Dad has toyed with the idea of still more, probably useless but potentially harmful surgery)
How to interact with physicians in empowered mode / advocate for him when he isn’t willing or able to do so himself
How to motivate Dad to take responsibility for keeping records such as medication lists
How to establish roles and boundaries and still communicate our love for one another

This daughter's wish? That I could have spared him MRSA; accelerated his rehab; prevented his falls and just provided greater comfort. My experience with Dad motivates me to keep advocating for patient safety; patients' access to their records; for shared decision making and basically the whole epatient manifesto.

Moving forward we'll need to keep an eye on his creatinine, his mood, his foot drop, his balance, his cholesterol, skin and much more. After just four days together I don't know what it's like to walk in his orthopedic shoes, but I know I want to help make his path as easy as possible.

How to Prevent YOUR Breast Cancer

2011-06-12T20:26:00.000-07:00

The notion of preventing breast cancer is exciting, but individual postmenopausal women should proceed cautiously when considering taking aromatase inhibitors, or “AIs” for this purpose. #buzzkill

Widely reported during the past week was a finding that “exemestane” --one of a class of drugs known as aromatase inhibitors, or “AIs” – “should be considered a new option for primary prevention of breast cancer.” The data were presented at the annual ASCO Conference and published simultaneously in the NEJM (available free).

Exemestane is the generic name of a medication made by Pfizer and marketed as Aromasin. It is one of three formulations of AIs currently available. They work by blocking the body’s ability to convert androgens into estrogen.

Cost/Benefit

As it exists today the cost/benefit equation is flawed at both ends. We have an inadequate grasp of the true human cost of chemoprevention of breast cancer and in many cases an exaggerated (and unwarranted ) fear of breast cancer.

We cannot know with much accuracy who will benefit from exemestane and without accurate, specific determinants of high risk we may end up medicating too many people. The editorial accompanying the study’s publication in the NEJM was only slightly less giddy than the mainstream media coverage, noting “Key issues are the identification of high-risk cohorts and biomarkers that can predict response to a particular intervention.” However, NEJM failed to also call for research into identification and biomarkers that can predict, prior to treatment, which women are more likely to suffer adverse events.

I understand that quality of life was measured and found unaffected in the study. But breast cancer researcher Dr Susan Love reminded us:

Side effects, such as arthritis and joint pain, hot flashes, sexual problems, fatigue, and insomnia… were dismissed as not serious, but it should be noted that one-third of the women on exemestane stopped taking it during the three years of the study. (emphasis mine)

Before we “ask our doctors about” this pill, women need a more robust understanding of the potential health and lifestyle consequences of exemestane therapy. Doctors need to fully consider quality of life issues. Together, women and their doctors should make decision about chemoprevention that – like every therapy decision – are individualized to the greatest extent possible.

Tucson

2011-02-10T16:45:00.000-08:00

Tucson is my old stomping ground. Before moving to San Francisco I worked for a publicly funded behavioral health provider there. We were hardcore: distributing methadone at 6am and opening residential treatment for addicted moms. It was a struggle to provide even a small fraction of the psychiatric help that was needed. My colleagues were hardworking, clever and burned out. I trusted every last one of them.

So I was a little peeved this week when I heard a commentary on KQED, my local public radio. Jorge Wong, a Northern California public mental health administrator, gave a little rah-rah for California's mental health care at the expense of Arizona. He mentioned the assassination attempt on Congresswoman Gabby Giffords in his intro, to make his point sound like news. "...states like Arizona should realize the value of a Mental Health Services Act and adopt one," he said.

Duh. Admit it, Dr Wong, you know nothing of the battles over behavioral health in Arizona. Good people have worked long and hard to pass enabling legislation, attract federal money into their communities and offer the right services to the right people at the right time. It's always been an uphill battle.

California may be more cutting edge when it comes to social change, but now it is also faced with a $25 billion budget deficit. Voters passed the "treatment not jail" Proposition 36 in 2000 but prisons here remain full, and with woefully inadequate state money for the treatment end of Prop 36, it's only the law enforcement side of the equation that is fully functioning here.

Don't drag Representative Giffords into this - unless it is to show her support for behavioral health funding. She's pictured above with mental health providers in a photo dated November, 2010 at what looks like a ribbon cutting in Tucson. Godspeed.

Safety First

2010-11-19T13:32:00.000-08:00

Several weeks ago Consumer Reports published a very practical, easy-to-comprehend guide to patient safety. "Staying Safe in the Hospital" is full of nuggets like “Question, question, question until things are explained in a way you understand." I've been to the hospital recently. You gotta watch out when you're there.

************************************

Methicillin resistant Staphylococcus aureus, or MRSA, is responsible for difficult-to-treat infections in humans. Hospital-acquired (aka "healthcare associated" or "HA-MRSA") infections afflict about 94,000 Americans each year and are associated with more than 16,000 deaths per year.

About 85 percent of all invasive MRSA infections in the US in 2005 were associated with healthcare, and of those, about two-thirds occurred outside of the hospital - in acute care settings, nursings homes, etc. These MRSA infections were 19 percent fatal, according to a study published in 2007 in JAMA.

In the first three quarters of this year 42,793 healthcare-associated infections have been reported to the Pennsylvania Department of Health. Thirteen nursing homes remain out of compliance for reporting...

************************************

Mom's old 'hood

Q: How do I get to the hospital...?
A: Just keep standing in the middle of street, lady!

In fact the hospital is about two blocks from the house where my mom grew up. It's weird how the neighborhood has changed since I was a kid. Now an enormous medical complex dominates the landscape and drives interesting foot traffic to the ubiquitous Starbucks. Some people wear business clothes; a lot more wear athletic gear. Some wear purple scrubs and wait impatiently. Some wear hospital gowns and slippers: they have escaped only long enough to smoke a cigarette or maybe enjoy a cup of coffee.

Girls and Breast Cancer

2010-11-14T12:40:00.000-08:00

I was confused by the essay "Think About Pink" by Peggy Orenstein in today's New York Times Magazine. Primarily I read it as a missed opportunity to discuss real research and present actionable information. For instance, why did she include no discussion of steps that girls and young women can take to reduce their future risk of breast cancer? Beyond the dubious self exam and age-inappropriate mammogram, there are behaviors moms (and dads) can both model and encourage in their daughters. The best documented: building a lifelong habit of physical activity. Research shows

...breast cancer risk is directly related to the total number of ovulatory cycles a woman experiences during her lifetime and anything that can reduce the number of ovulatory cycles may decrease a woman's risk for breast cancer...(in one retrospective study) the number of hours a woman was physically active per week from (the time) when she started menstruation until one year before a breast cancer diagnosis was strongly linked to reduced breast cancer risk even when controlling for other factors. (Zero Breast Cancer)

Zero Breast Cancer is part of the Breast Cancer and the Environment Research Center collaborative that has been gathering large scale epidemiological data for more than seven years. Its public awareness messages focus on young women in a respectful, non titillating manner. Its helpful publications include this "Top 12 Breast Cancer and Environment Messages for Teens."

Something else puzzles me. I have worked with, played with, interviewed and marveled at women with breast cancer for more than 10 years. Despite being well schooled in its literature I rarely encounter the interpretation of cancer as "an assault on...femininity." But if it's true, as Orenstein wrote that "today's festishizing of breasts comes at the expense of the bodies, hearts and minds attached to them" then I would welcome some information about how we might address this injustice at its root. After all, our culture doesn't fetishize only diseased breasts. Have we given up on teaching young women to identify their femininity in a more holistic fashion? Are there additional ways we could stop colluding in a misogynist message that "breasts are the fundamental, defining aspect of femininity?"

I've blogged about this before; I'm no fan of Pink October. I agree with Orenstein that a popular culture focus on what she calls "sexy cancer" suppresses discussions of real cancer. But it's difficult to reframe the public discourse without actionable information. Identifying and validating breast cancer prevention strategies is difficult and -- yep, underfunded. Real cancer does suck, as Orenstein's informant said, and as activist advocates Breast Cancer Action have said all along.

Patient Advocacy in the Family

2010-10-10T14:18:00.000-07:00

I've had a week of capital-P patient advocacy. Per my previous entry I attended the Patients 2.0 meeting in San Francisco. But I admit I was a bit distracted: I had returned home to SF following five days with my dad back east. He's recovering from a revision to a 13-year-old hip replacement. Because it might be educational for anyone reading and because it's therapeutic for me I'd like to note some of the issues we have dealt with:

Wrong Placement
Dad should have been discharged from the acute care hospital to a facility with a reputable rehab program. He had, in fact, conducted research and selected one. However, on discharge day no bed was available. He settled for his second choice, a nursing home (skilled nursing facility, or SNF).

Wrong Room
He was initially placed in a small room with only a curtain between his bed and that of a man with cognitive impairment. Because the other patient was considered at risk of falling he was outfitted with a shrieking device meant to summon the staff if he tried to walk. Unfortunately the staff response was lackadaisical at best. Dad was subjected to sustained shrieking. Night and day.

Wrong Meds
Somehow my father arrived at the SNF with a prescription for narcotic pain medication -- which he rarely needed -- but no scrip for acetaminophen. It took two days, a charge nurse and a social worker to fix that.

Wrong Space-Time Continuum
A truly "down-the-rabbit-hole" moment occurred when the SNF "lost" my father during a room change. Second Floor nursing admin said he was on the First Floor. First Floor said he wasn't -- even as we stood together, looking at Dad sitting forlornly in his wheelchair. What First Floor meant was that his chart, his orders and the responsibility for him had been transfered to Second Floor. Although his bed had been stripped, no one had answered his call button. No one had arrived to help him wash or shave. No one put clean sheets on the bed so he could relax back into it and no one wanted to take responsibility.

Wrong Answer
We asked for an ice pack to help relieve the pain of Dad's surgical site. None were available upon first, second, third request. Finally I found the cafeteria's ice machine and filled up a ziploc bag for him.

Wrong Risk Management

Hand hygiene was sorely lacking. Attendants frequently failed to wash their hands or put on gloves. Their job is made more difficult by a paucity of dispensers for hand-sanitizer. We brought our own to keep in the room.

Wrong Technology

One night the phones stopped working. Because he rarely uses and didn't have a cel phone with him, we couldn't reach Dad until he called later the next day.

Wrong Therapy
MY biggest problem was this: even though he is two weeks post-op Dad hasn't walked for more than three minutes. That's just wrong.

SNF policy is designed to prevent falls, which is admirable, except when it's inappropriate. I battled to see his surgeon's orders. After a few days (no one works in PT on the weekend) I saw that Dad was restricted in the amount of weight he could put on his affected leg. The SNF used this as an excuse to prohibit Dad from walking with his walker. Until that ruling he had eagerly and nimbly taken short walks in the hallway (Dad has been a gym rat for years). When the authorities from the Physical Therapy Unit forbade it, he compliantly reverted to sitting in his wheelchair.

I contacted Dad's surgeon whose staff concurred it was desirable for Dad to be up and moving. When I explained that the SNF was using his weight-bearing restriction to impede Dad's recovery, the surgeon lifted the restriction. The SNF, however, appears to have dissuaded Dad from walking, at least until their overworked physical therapists return to work on Monday to escort him.

Wrong Response
I don't mean to sound melodramatic: let's not worry too much about Dad. He is very strong and I am still pretty confident he will make a good -- if delayed -- recovery. I don't mean to villify any individuals or the institution in which he is living. In our absurd healthcare system it's just another case of "the situation is getting worse faster than I can lower my expectations " (Venture Capitalist Lisa Suennen at Health 2.0, quoting actress Carrie Fisher).

Right Take-away Message

Patients must advocate for their own wellbeing and caregivers play a vital role. The doctor-patient paradigm is shifting: just look at The Society for Participatory Medicine. Organized advocacy groups are effectively prodding the process and increasingly empowered individuals are creating and using tools such as

Internet research
The Empowered Patient by Elizabeth Cohen
You, the Smart Patient by Drs Oz and Roizen
Dozens of online communities
Emerging services and products like those demonstrated at Health 2.0.

At the end of the day...get a sleeping pill if you need one but verify it's the right pill before you take it.