Seeing Your Doctor for Prevention,
Treating On Your Own: A Report from the Field

First off, let me be clear: what I report below I am not recommending. My first obligation is to my readers. Also, I am grateful to Brooke Binkowski, a stellar journalist-friend, who spontaneously emailed me this story this morning. It arrived in my inbox amid a heated social-media discussion about who the real villains are in the failure to vaccinate. Also, why is it we can’t reach them. Are they the rich and entitled, the libertarians, the natural, organic folk, or who?

Sometimes, you hear a story and it makes you want to use it while it’s hot. This is a gem of a story, but it’s not really about vaccines very much. If you like it, you might want to follow Brooke at @brooklynmarie. She has a lot of great stories up her sleeve.

Here’s what Brooke wrote:

Because of who I am and where I live, I collect old hippies, you know, I feed them, talk to them, hang out with them… one of them stopped by yesterday, he’s about 70, an ex-drug runner, never has taken care of his health, has diabetes, and has had major heart surgery last year (I went to see him in the hospital.)

Anyway I said: “How have you been? He said, “Oh, I’ve been fine. I ran into complications recently, did something to my pinky toe, so I cut it off.” I said, “I’m sorry – you had it cut off?” He said “No, I cut it off myself, just nipped it off with a pair of pliers, wanna see?” (of course I did, I am one of those people)

So he’s showing it to me, it’s healing nicely, etc, and I say to him, well what happened? He said: “I’m diabetic, it was getting gangrenous, just wasn’t feeling it, so… also I decided to go off my heart meds, they were making me feel like crap.” So this guy, the ex-drug runner who cuts off his own toes and now lives out in a boat on the marina. He has a daughter. Guess what?  He got her vaccinated.

Man holds pliers to his toe. This is a likeness,  This toe is healthy and was left alone.

Man holds pliers to his toe. This is a likeness, not the toe or the man in the story.This toe is healthy and was left alone.

Personalized Medicine: Read the Chart!

This is a guest post by Ricki Lewis, PhD, who blogs at DNAScience, part of the PLOS blog network. Ricki is a science writer with a PhD in genetics. The author of several textbooks and thousands of articles in scientific, medical, and consumer publications, Ricki’s first narrative nonfiction book, “The Forever Fix: Gene Therapy and the Boy Who Saved It,” was published by St. Martin’s Press in March 2012. In addition to writing, Ricki provides genetic counseling for parents-to-be at CareNet Medical Group in Schenectady, NY and teaches “Genethics” an online course for master’s degree students at the Alden March Bioethics Institute of Albany Medical Center.


stethoscope on med chartWhile we’re busy debating the pros and cons of clinical genome sequencing and tossing around buzzwords like “personalized” and “translational” medicine, I’ve recently caught some health care providers ignoring the archaic skills of communication and common sense. So while we await genome analysis apps on our smartphones and DNA sequence annotators in our doctors’ offices, here are 3 suggestions on how to provide personalized medicine right now:

1. Read the patient’s chart (paper or digital)

2. Listen to the patient

3. Look at the patient

Disclaimer: Today’s blog is anecdotal and non-scientific, but may identify a trend.

A few weeks ago, I had a long-overdue check-up, with a nurse practitioner. It was my first visit to the practice, which had provided excellent urgent care.

On the medical history form, I described my circa 1993 thyroid cancer in intimate histological detail: papillary in left lobe, follicular in the right.

The NP spent an impressive 45 minutes asking questions and listening to me – or so I thought. During the brief physical exam, I told her all about my thyroid cancer, my daily Synthroid dose, and even brought her hand to my throat, having noticed that dentists get very excited at my lack of a thyroid gland. No thyroid tests needed, said I. My endocrinologist had recently done them.

So I was surprised when, early the next morning, a Saturday, my cell phone quacked.

“Ricki? This is the nurse practitioner. I’m afraid something very alarming has turned up in your bloodwork.”

I braced myself.

“Your thyroid hormone is very low.”

Imagine that!

“Could that possibly be because I take a pill every morning to account for the fact that my thyroid gland has not been part of me for 20 years?” Had she read the chart, where she herself had typed in the cancer info and I’d written it? Did she recall palpating my glandless neck? And why didn’t my health insurer note the duplicated blood test?

“OK. Let’s move on to your LDL. It’s too high.”

Genetic counselors are experts in listening, documenting, recalling, and making important clinical connections. (NHGRI)

Actually, it wasn’t, considering the family history of zero cardiovascular disease that she had neglected to inquire about.

Happily, my HDL was just fine, but she didn’t appreciate my pointing out that HDL is no longer considered a valid biomarker for everyone — geneticists noticed years ago that quite a few families with perfectly good tickers have low (supposedly high-risk) HDL. I’m not going to link to it because the news is pervasive on the Internet. I’ve already altered my textbooks.

Still, she wanted me on a statin, stat, perturbed at my refusal to sign up for a lifetime on a drug that I didn’t need. (Within a few seconds of ending the call, I found a blog by an MD, from 2007, warning of the dangers of statins and providing cases of exactly who shouldn’t be on them. Minus a few years, the “60 year-old woman who is trim, exercises daily, does not smoke, and has no family history of heart disease = no cholesterol-lowering medication” was me.)

Time to switch gears.

“You should begin an exercise program,” the NP helpfully suggested.

“Is the 60 to 90 minutes a day I told you about not enough?”

“Hmmm. Well, you need a low-fat diet to lower your cholesterol.”

I nicely reminded her that she might require a refresher on basic biochemistry if she thought eating less cholesterol lowers cholesterol. It doesn’t work that way. My 10-year low-carb diet made the most sense. The low-fat diet she suggested was exactly what not to do.

I could have chalked up this forgetfulness to a packed schedule, too many patients to recall details, but she spent 45 minutes with me – she probably saw only a handful of patients a day. And she could have at least opened the chart before she called me with potentially upsetting news.

Burying one’s head in a laptop whilst the patient sits there, in the glamorous paper gown, can be a problem too.

Soon after my encounter with the NP, I took my mother-in-law to the cardiologist. After the requisite long wait, we went into an examining room for another wait, and finally the snazzily-dressed doctor rushed into the exam room, pulled up a stool, and proceeded to become one with his laptop. Tapping away, he fired incomprehensible drug and disease names at his elderly patient. He never looked up. And he yammered on about the importance of high HDL, too. I could have sat there with a water buffalo instead of my mother-in-law and he probably wouldn’t have noticed anything amiss until the 2-minute physical exam.

Look at the patient. Engage.

And then there’s the fictional example of young Dr. Gorgeous on the new medical drama “Monday Mornings” who, in the debut episode, let a boy bleed out on the operating table from an inherited clotting disorder, having forgotten to query the single mom about the father’s medical history. Oops.

The worst example of physician cluelessness happened to a friend I’ll call Karen, who recently had weight loss surgery. This is not a cosmetic procedure. In many people, the surgery ends years of diabetes, polycystic ovarian syndrome, hypertension, even depression.

Karen checked out several offerings. A program at a local hospital seemed so eager to sign her up that it felt like a drive-through. She finally found a bariatric “center of excellence” near her home in a large, midwestern city. She respected the tough requirements: lose 5% of her body weight, and keep her blood sugar down. Specifically, that meant maintaining her A1C level at 7 or below. A1C measures how much blood sugar is carried attached to hemoglobin, the oxygen-carrying proteins packed into red blood cells. Because a red blood cell lives approximately 3 months, the A1C test is repeated every 3 months.

Karen’s A1C rose a bit last August. Too many barbecues, maybe.

“Oh, don’t worry,” chirped the endocrinologist, clutching the chart, unopened, sitting in front of her laptop, also unopened. “If it’s high again, just let me know, I can help. Meanwhile, take two more meds, and up the other one. I’ll email it to your pharmacy.” Tap tap tap.

No one seemed overly concerned with the A1C, because six weeks later, Karen had the all-important appointment with the surgeon, to get “the date.”

First, an intern flounced into the room and pulled up a stool. She sat down, a paper chart on her lap, unopened. A laptop next to her, unopened. The newbie doctor asked a few condescending questions to determine whether Karen was a moron or not and actually knew what the various weight loss surgeries — band, sleeve, bypass — entailed. She did. So the intern launched into a lecture about how sometimes the doc has to remove the gallbladder during the surgery.

Much as I had to remind my NP that I had no thyroid, Karen had to fill the intern in on that fact that her gallbladder had exited her body some 8 years previously. Karen, realizing the doctor was still in training, suggested that perhaps she consider actually reading a patient’s chart beforehand. What a concept!

Deer-in-the-headlights, the flustered intern raced out, without asking the important questions, for her job was to screen the patients to save the surgeon time. How much weight have you lost? What’s your most recent A1C? It was all there in the chart.

Then the surgeon came in. Very serious. He, too, held a chart, unopened. After a brief speech comparing the surgical options, he gave Karen the thumbs-up, and off she happily trooped to pick the date. She assumed he and the nurse with the scheduling calendar knew her A1C. He seemingly assumed the intern, his screener, had no objections to the A1C. She’d passed!

Karen was so excited. The countdown began to the surgery, which would be in December. The diet and exercise continued.

And then Karen had routine bloodwork, her red blood cells having recycled themselves, the hemoglobin within hopefully free of the offending sugar. Shortly after, the bariatric center called. The surgeon had canceled her surgery. Her A1C was too high.

Her A1C was, in fact, just a drop lower than it had been on the day that the surgeon had given her the go-ahead. Had he, or his biliarily-obsessed underling, so much as glanced at the chart, no date would have been bestowed. No apology for the setback.

Karen was devastated, but at first hopeful. “Remember, the endocrinologist said she’d help!” Karen cried to me over the phone.

So she emailed the doc, called, and tried to get her next appointment moved up. She got nowhere. No answers.

Time passed. Finally, the next endocrinology appointment rolled around, which was, in happier times, supposed to be the pre-op check-up.

After the requisite hour-long wait, for no apparent reason and without explanation or apology, the endocrinologist bustled into the room, holding an unopened chart.

“How are you doing?” Big smile. She sat down on the ever-present bewheeled stool, opened her laptop, and then noticed Karen’s uncharacteristic silence.

“How are things?” she tried again.

“Terrible,” said Karen, starting to cry. Her story spilled out. “Why didn’t you answer my email? Return my phone calls?”

The doctor quickly scanned her email and claimed never to have seen any messages. Not true, Karen later deduced. It’s easy enough to check.

“Oh, but look! This is your pre-op visit!”

The doc was still utterly confused, until Karen pointed out, again, that the problem was the A1C. When the doctor launched into the familiar litany of upping the non-insulin meds, with no obvious concern about the potential dangers of taking drugs for many months that didn’t do anything, a strategy that would delay the surgery at least another three months as a new generation of red blood cells formed from reticulocytes extruding their nuclei, Karen had had enough.

“Give. Me. Insulin. NOW.”

The doctor readily agreed, scurried out of the room purportedly to figure out how she had not known of this disaster, and a nice nurse came in to demonstrate insulin injections. Karen learned more in 5 minutes from the nurse/diabetes educator than she had with any physician she’d encountered during her long journey to weight loss surgery.

Theoretically, electronic medical records are a great idea, having a patient’s information instantly available on a laptop or tablet. But as I’ve learned from writing textbooks, you lose something in being restricted to seeing one page at a time – you learn more when pages are compared on real paper, in real space. At the ob/gyn practice where I do genetic counseling, we switched to electronic records a few years ago – but practically, we still use paper charts. Otherwise, you can miss things.

A timeless type of medical chart, the pedigree. (NHGRI)

In those medical charts, electronic or dead tree, the family history is of paramount importance. This is hardly a new concept, and family histories are certainly stressed early on in medical school, as anyone who’s been examined at a teaching hospital can attest. But somewhere along the way, amidst all the new tests and technologies, the biotech bells and whistles, the importance of the history fades.

Maybe the new genomics will bring back both the family history and the pedigree.

Posed Alan Guttmacher, MD, Francis Collins, MD, PhD, and Richard Carmona, MD, MPH, in “The Family History – More Important Than Ever” in The New England Journal of Medicine, “Will the family history eventually become a relic of antiquated medical practice that has been replaced by more ‘modern’ tools? For instance, in a decade or so, when sequencing a patient’s genome may cost less than $1,000, will it still be worth a practitioner’s time to obtain the less precise information contained in a family history? We think so.”


That was written in November 2004, so the decade’s almost up. Genome sequencing is here, arriving faster than expected, with cost plummeting. But our genome information will only be actionable in a piecemeal fashion, until we understand all gene-gene and gene-environment interactions, and all the variations therein. Family history will be crucial to the interpretation, for it provides the context without which identifying gene variants may be meaningless. Even tragic.

Reading the chart, especially the family history, can provide valuable clues – as can what the patient says, and how she says it.

Let’s bring common sense and intuition back to the practice of medicine.

Mental Health and the Patient Point of View:
More High-Quality Stories Needed

I am thrilled that later today, Martha Roberts’ post on her own experience taking medication for mental illness, will run here. I first came across her post through a tweet from Ben Goldacre, author of Bad Pharma. It’s nice to know that he has not oversimplified the “bad pharma” argument into this meme: all drugs are inevitably bad for mental illness, overused, and inappropriate. Yes, there are huge problems with selective publishing of clinical trials data, withholding negative drug trials, and more. But mental health and mental illness are a lot more nuanced than a simple meme.

A lot more ink needs to be written about mental illnesses from the patient point of view, that show the real-life hurdles of people unfairly stigmatized, unemployed, or under-employed. I hope that this upcoming post (I’ll link to it here) is the first of many more.

If you have something to say about this, use the comments, or if you have a longer contribution, email me at patientpov “at” gmail dot com.

In Her Own Words: A Young Woman With
Rheumatoid Arthritis Acknowledges Her Disability

Credit: National Institutes of Health.

How do young people cope with chronic, debilitating conditions, like rheumatoid arthritis and fibromyalgia? Patient POV interviewed Lisa Jaffe Hubbell, a young woman, who only last month acknowledged to herself, that she is disabled, and is unlikely to regain function. Lisa is also a successful writer and blogger, who blogs regularly at Landguppy Productions.

In this interview, she discusses her concerns about getting quality medical care, affordability of health care, and why the presidential election worries her.




Can you tell me how long you have had rheumatoid arthritis? Is this the key reason you are now disabled? Do you have other conditions that are contributing to your disability?

I was diagnosed 10 years ago now, and I think I always figured I’d get better. Or better enough to be able to do most of the things I want to do. Over time, as more and more drugs worked for a while and then failed – and none worked fabulously – I came to realize I’d never be the same. I’d never go for a long hike, be able to prepare for a dinner party without having a few hard days after it was over, go more than a day without a mid-day rest. I’m not the chief jar opener any more. I can’t always bend over to fill the dog’s water dish. And she’s big and pulls hard when confronted by a dastardly squirrel.  I can’t always hold her back.

My main diagnosis is sero-negative rheumatoid arthropathy, but I also have fibromyalgia, which rears its head when I have a flare. I also have an autoimmune thyroid disorder (Hashimoto’s disease).

What medications are you taking? Does your insurance cover these medications? Are they affordable?

I have had great medical coverage and mediocre coverage over the years.

The first few years, my insurance came from a small company and the copays became a significant burden. Biologics are thousands of dollars a month, and if I am responsible for a 10% copay, that’s hundreds of dollars. A couple of years I actually hit my stop loss limit, where you spend so much that the insurance company stops charging you copays. After that, I had insurance through Microsoft, which had no copayments. It was great. Now, I’m somewhere in the middle, with 10% copayments on my biologics –although I am enrolled in a program where the pharmaceutical company covers that copayment – and $15-30 copayments for other drugs. I have copayments for all my appointments, too.

My drugs change with my condition. Currently, I take Actemera, an infused biologic, every month. I take as little meloxicam as possible because my BP spiked about 18 months ago from the NSAID use and my kidney function started to look bad last month. I take Cymbalta and at night I take tramadol for pain. I’m off methotrexate because my liver function isn’t fabulous any more. My other meds are all related to side effects of the drugs I take for my arthritis. I take an anti-androgen called spirolactalone because my hair falls out from the atenalol I take for my blood pressure. I take omeprezol for my stomach when the meds upset it. One of my drugs – I have never figured out which – makes me sweat profusely, but only on my head. I’m not joking. Just my head. So I take a drug called glycopyrolate so that I’m not that sweaty girl when I go out in public. I also take fish oil, folate, B complex, CoQ10, a multivitamin, and because so much of what I take constipates me, a stool softener and Miralax.

Has dealing with insurance issues been difficult? How so?

My biggest problem happened at the end of summer, when a change of insurance companies forced us to complain a lot and often until they approved my infusion treatments. That I had been covered continuously and approved for the treatment by one insurer seemed to make no difference to the new one. My infusion was two weeks late, and a month later, I’m still trying to get back up to where I should be at this point after my infusion.

Is there anything that you’d advise people with your condition in terms of negotiating good healthcare?

Don’t be afraid to be a pain in the ass. And be sure that people understand that this isn’t just a little disease that causes pain. I have a shorter life span ahead of me, I am at risk for some pretty awful things like sudden gastric bleeds, sudden cardiac events, liver cancer. I could go on. This is a systemic disease that can impact not just my mobility, but my cognitive abilities, my vision. It will be, at least indirectly, the eventual cause of my death.

What kind of outside help do you get? If we lived in a more perfect outside world, is there any kind of help that you think you should be made available to you?

I have someone else do my garden and a cleaner twice a month. I pay for those services. I have a teenager who has to do a lot of fetching for me. Evenings are hard, and once I stop “doing” I find it hard to start again. I spent many years thinking I must just be lazy. It took a lot of therapy to stop those messages from running through my head. In a perfect world people would be more connected to their neighbors and none of us would be shy about asking for help. I’ve always been the helper, not the helped, so I don’t ask. I muddle through. My house isn’t as clean as it could be. I need the interior painted, but until I have 10 grand to spare, that won’t happen because I really can’t do it myself. Especially the taping off. Again, if I was more secure in my disability, I’d probably ask for more help. But that’s just too hard for me at this point.

As you became more disabled, have you had to make physical accommodations in your home, travel, work?  How easy or difficult were they to arrange? Emotionally, how have you dealt with these shifts?

I haven’t had to do much of any accommodating except for reducing the quantity of what I do. I use my teenager to bend over for me. I do find it hard to get into my car. I have people carry my groceries to the car for me. I try to avoid stairs. So if I go to a concert, I ask for disabled seating, which can be crappy, or can be with the sound guy (the best seats sound wise in the house). I haven’t taken a flight in a while, but I think next time I’ll ask for a ride to the gate and early seating.

Compared with other health problems like diabetes or hypertension, how do you think others look at rheumatoid arthritis?  Is there anything you would want other people to understand about this?

People don’t view rheumatoid arthritis as a bad disease. They hear arthritis and usually think “old people.” But that’s osteo arthritis. And while the joint damage is the same, the osteo version doesn’t come with other systemic problems.

It’s kind of invisible unless you are so sick you need a wheelchair or walker. People look at me in the disabled parking space and I’m sure some think I’m using my parents’ placard. But it’s mine, and while I don’t always need it, I usually use it. I view it as the only perk of being sick. I wish people understood how hard it is to just move – not always because of pain, but because of what doctors refer to as stiffness, but which I talk about in terms of feeling like I’m trying to move through thick mud or cement. And the fatigue is probably the most debilitating part of the disease.

How adequate are social supports in your life? In others with RA?

I have great friends and a wonderful boyfriend who understand what I can and can’t do. It can be an isolating condition, though, because you just don’t look sick.

Is there anything that you would want the world at large to know about a debilitating condition like RA and how you could live happier with it?

I think my biggest message is that when you see someone in a disabled space with a placard who looks like you, don’t assume they aren’t sick. When you see the house with the ratty yard that needs attention, don’t figure they are just lazy. The mom who never helps out in the classroom? You have no idea what her issues are. And ask if you can help with specific things. Asking if you can help with yard work, window washing, or something specific is better than telling someone to call if you need anything.

Because you live with RA, have you made any additional efforts to write a living will and advance directives than perhaps the next person not having RA?

I had a really bad flare last January and was sure I was going to die. I’d never felt that way before. So I redid my will and advance directives and trusts, talked to friends and family. I have every hope of living for at least another half century and try to live my life in a way to make that happen. I’m hopeful, though, not stupid

Are there transitions that may lie ahead that scare you?

I worry about what happens if Romney and the Republicans win. I haven’t gotten a divorce yet because I need my Wasband’s insurance. I can’t afford the kind of insurance I’d need to adequately treat my disease. I hope in 2014, the coming of insurance exchanges will allow me to divorce and find insurance that I can afford and that meets my needs.

Join Patient-Centered Outcomes Research Institute (PCORI) Dialogue on National Research Priorities Today

Are you interested in participating in efforts to shape patient-centered outcomes research priorities. Then, don’t miss today’s meeting, webcast starting 9:30 am, or via telephone to 800 number line posted below. Got comments for the PCORI people: see submission guidelines. Disclosure: This blog is independent and not part of this effort.

The Patient-Centered Outcomes Research Institute (PCORI) will hold a National Patient and Stakeholder Dialogue on its first draft National Priorities for Research and Research Agenda on Monday, February 27, 2012, from 9:30 a.m.-5:00 p.m. EST, at the National Press Club in Washington, D.C.


View Webcast

The event will dedicate three and a half hours to receiving public comment, and include presentations by PCORI and a roundtable discussion involving patient advocates, clinicians and others from the health care community.

Individuals can register to attend and provide public comment here. A webcast and teleconference will be provided. A portion of the comment period will be reserved to receive input from individuals participating by phone.

Advanced Registration is now closed, as of February 23, because the event space has reached capacity. The webcast will remain open to the public. You do not need to register in advance to view the webcast.

The event webcast will feature full audio through your computer so there is no need to call in to the teleconference if you are watching online. We strongly encourage individuals with internet access to watch the webcast to keep the phone lines open to those who do not. You can access the Monday’s webcast here.

To listen to the event by telephone call: 800-704-5185.

The National Patient and Stakeholder Dialogue supports PCORI’s public comment period on the national priorities and research agenda and provides individuals an opportunity to speak directly to PCORI in an open, public format.

Guidelines for Public Comments

Patient POV’s Best of 2011

Here’s my “best of 2011” Patient POV, based on discussion, feedback, and commentary from readers and bloggers.

1. Writing About Alzheimer’s and Dementia Gets Complicated.

Be careful what you wish for: do we want more people screened for Alzheimer’s disease, put on questionable drugs, is the amyloid hypothesis our best bet? Think carefully before you push for counting folks and raising awareness.

2. Inattention to Drug Safety in the Elderly Leaves Generations at Risk.

You would be shortsighted if you read this as just an anecdotal story of my mother’s unlucky break with high-dose simvastatin. More importantly, we are drugging the elderly with medicines that were never tested on them, at doses that are poorly tolerated. Should FDA do more at the front end? Should comparative effectiveness research give us better information on drug safety?

3. On Disclosure, Transparency, and Standards: A Call for Uniform Standards in Patient Advocacy.

Is undisclosed industry sponsorship polluting what we hear about the patient’s point of view? Possibly. Let’s get a handle on who is speaking up for the patient, whether industry is driving the discussion, and letting readers decide from there. Are other agendas pushing the patient point of view?

4. LGBT Healthcare: Out of the Closet in New York

LGBT healthcare made some headway this year, but it is not all rosy. The Institute of Medicine released it first major report on LGBT healthcare, raising the need for better access to care, acceptance, and research. In New York, same sex marriage finally passed, and NYC Health and Hospitals Corporation, the country’s largest public health system, adopted a landmark program aimed at educating staff on appropriate treatment of LGBT patients.

5. How One Man Faced a Prostate Cancer Diagnosis.

One of my earliest posts on how a man sought a physician in the northeast to follow him with active surveillance for prostate cancer, documented the difficulty finding doctors who are comfortable with active surveillance. This post pre-dated the US Preventive Services Task Force on PSA screening and the National Institutes of Health Consensus Development Panel Draft Report toward the end of the year. It’s an interesting case study in bias to treat for many American doctors.

6. Planning Orthopedic Surgery: Ask Ahead About Aftercare

Two patients from different parts of the country talk about the lack of aftercare that meets patient needs following orthopedic surgery. Unfortunately, once orthopods cover themselves during the immediate post-op period, they are difficult to find if you have issues with pain, activity limitations, and more.

7. What the Macular Degeneration Drug Trial Means

The Comparison of Age-related macular degeneration drug Treatment Trial (CATT), an NIH trial, reported the first outcomes, finding that the cheaper alternative (Avastin) was just as good as the costly one, Lucentis. 2011 was an encouraging year for people with macular degeneration. There is much more to follow going forward: I hope to take a look at aggressive marketing of high-cost drugs, particularly when there is no proven added benefit.

8. On Don Berwick and the Future of Healthcare Reform

Just before the holidays, Don Berwick, head of the Centers for Medicare and Medicaid, resigned, after the GOP rallied to get him out of town. This is a look at what he brought to healthcare for patients and the patients’ point of view. Good luck, Don. We’ll miss you.

9. On Mother’s Day, Invest in Maternal Health

This has been a terrible year, with threats to Roe v. Wade, HHS Sebelius reversal of plan B, and more gutting of women’s health. This post was written before many more adverse actions reversed headway in the United States for women’s health.

10. What’s the Patient Got to Do With It?

An important post to leave you with before 2012, this raises the promise of bringing patients in at the front end to help us get to a true patient-centered healthcare system. Will we get there in 2012? Will health reform survive? With initiatives like the Patient Centered Outcomes Research Institute really elicit patient points of view that matter?

That’s it for 2011 from me. I’d love to hear more from you on what you’d like to see here in 2012 and  I hope to bring you more stories that drive healthcare change.

Best wishes to all of you for  a happy and healthy 2012!


Top Patient POV Posts in First 2 Months

I started Patient POV on March 29th and I have been meaning to take a look back at posts that got people thinking about healthcare, about reporting on health, and what ideas are worth considering for the healthcare system to move closer to providing the elements of care that matter most to patients.

Here’s my list of the top posts  that engaged readers and people on social media the most:

Writing About Alzheimer’s and Dementia Gets Complicated
I attended a National Press Foundation fellowship program on Alzheimer’s Disease: Issues in 2011. Advocates put Alzheimer’s forward as “the coming tsunami in medicine.” Tsunamis overpower: there needs to be attention to how to write about Alzheimer’s for the public’s good. If it is one part of the post that is wearing, it is my longwinded raising of questions. If I had more time, I would have tempered that stylistically, but I hope the takeaway questions are seriously considered.

How One Man Faced a Prostate Cancer Diagnosis
I wanted to write an article about a man who chose active surveillance, which is ongoing monitoring to see whether prostate markers change, rather than “definitive treatment.” I was especially interested in this topic because of current controversies over prostate cancer screening, namely that many prostate cancers detected in asymptomatic men through PSA tests, do not become clinically significant. This raises the issue of potential overdiagnosis and overtreatment. There is no consensus of opinion over which prostate cancers can be safely left untreated, but the discussion is gaining steam, and it will be addressed at the National Institutes of Health later this year. In many countries, active surveillance is far more accepted by health authorities, doctors, and patients. It is a complicated issue: it is certainly not a good idea for many men, but it needs to be discussed more openly, and men and their significant others deserve to weigh the science and act on their preferences.

What the Macular Degeneration Drug Trial Means
First-year results from the National Eye Institutes CATT trial testing Avastin versus Lucentis for the wet form of age-related macular degeneration (AMD) proved to be of great interest to readers. The trial has one more year to go. I tried to break down issues that were not clear cut in other articles and get people thinking about the utility of a clinical trial in their lives.

On Disclosure, Transparency, and Firewalls: A Call for Uniform Standards
I have had major concerns about how to work with healthcare advocacy organizations in writing this blog. My preference is to speak with people who have their own opinions about their experiences in the healthcare system. Advocacy organizations obviously are another rich data source, but I think that if advocates viewpoints are discussed on Patient POV, we should know whether advocates represent a company, hold stock in an innovative patient-related product, receive dollars from industry, or the like. In other words, since money talks, let’s hold all to a universal standard of disclosure.

Social Media Weekend and Blogging on Patient POV
Sree Sreenivasam, a diverse group of panels, and volunteers made this happen at Columbia J-School for in New York. It was great to hear Andy Carvin (@carvin) speak about “no audience,” pitching that successful social media and blogging treats readers as experts, equals, and requires not talking down, or claims to represent readers. This is especially important in blogging here: I don’t portend to represent any patients.

Is There An Oncologist in the House?
This is a true story of a patient with lung cancer in search of an oncologist to follow him in a big northeastern city. The story puts the spotlight on a growing problem: a shortage of oncologists in the community and probable flight of oncologists to industry and more lucrative/less hassle opportunities. How will we come to grips with this in our society.

Planning Orthopedic Surgery: Ask Ahead About Aftercare
Two women, one on the east coast, the other on the west coast, who had multiple orthopedic surgeries. They had no aftercare, no clear way to discuss post-discharge questions with anyone on record. The American College of Orthopaedics did not get back to me regarding aftercare guidelines. If orthopedists think of aftercare, it seems to be limited to the immediate post-op setting and liability, but its hardly focused on the kinds of questions patients have.

It’s A Sign III – Deaf Access to Healthcare, by Billie Noakes
Guest blogger Billie Noakes writes about taking her deaf friend to the hospital, where over a five-day-stay, she sees an interpreter once. She is discharged with shingles pain, “which none of the expensive tests that she had” could point to. The story raises the issue that the deaf patient, not the hospital, should decide, when an interpreter is needed. In her friend’s case, medical errors were made because nobody understood what was going on. She simply had no clear way to communicate. Laws should really be changed to give the deaf more authority in requesting and obtaining an interpreter.

On Mother’s Day, Invest in Maternal Health
Mother’s Day is often a Hallmark moment, but this year, women are well aware of setbacks in women’s and maternal health, both in the United States and around the world. Maternal death statistics are not good for women living in poverty, for minority women, and in developing countries. This post is a call for action to ratchet up infrastructure to improve health outcomes for mothers and women.

Since I just finished 32 straight days of blogging last week, I thought this was a good time to take a look back. I am very interested in your ideas.

Please feel free to run an idea by me. I am especially interested in stories that NEED to be told, that can help to move the healthcare system forward, spurring happier patients with better outcomes.

You can suggest a story to me via patientpov “at” gmail “dot” com or follow me on twitter at lauranewmanny. To read some of my recent thoughts on the matter, see my post on May 29th.

6 Types of Patient Stories We Need to Hear More About

I hope that patient stories that I tell here can really make a contribution to helping healthcare match what really matters to patients. That means that I’d like to tell stories that have been invisible or bear continuing exposure, for health care systems to improve.

Here is a draft list of 6 types of stories—and I am open to suggestions—for the kind of stories that we ought to hear more about.

1.    We need to hear more from people who are isolated because of their medical condition, or because the healthcare system is not hospitable to them. We need to understand why we isolate them, and see whether we can change that. You guessed it: I believe in diversity and stimulation. I want our healthcare system to treat them like individuals, not like some category.

2.    I’d like to tell more about medical error stories that don’t blame workers or the process, so much as focus on ways patients feel objectified, when involving them might yield far better outcomes.

3.    Given the economy—which is not getting better for many (housing, jobs, access to insurance and care remain problematic), we need to hear a lot more about the impact of these factors on health and sickness, bankruptcy, housing, and a whole lot more.

4.    Clinical trials are considered one of the best ways to advance science-based medicine. Yet many people have reservations about enrolling, and for many trials, enrollment is slow. How do you view participating in clinical trials? Could they be designed better? Do you feel patient protections are in place?

5.    Funding and cutting programs make a big difference in people’s health. Do you know of a good program that is being cut? Or do you see an opportunity to invest in an innovative program that could really improve health?

6.    There is a sixth: the story I don’t even know needs to be told but is waiting to surprise me.

This list is rudimentary, put together this holiday weekend. As I said, please make suggestions in the comments or send me a discrete email to patientpov “at” gmail “dot”com. I respect patient privacy.
Happy Memorial Day to you!

WordCount Blogathon Opens Door to Unusual Patient Stories

On May 1, I joined the Word Count Blogathon, and already, I am meeting bloggers who have amazing stories to tell about the healthcare system. Among the stories that I hope to share with you are the following:

  • What happens when a deaf woman gets care in a hospital;
  • How a support group helps women have a vaginal birth after a cesarean section;
  • How a person is managing with rheumatoid arthritis;
  • What gets lost in translation when a patient does not speak English;
  • How a husband and wife face gender reassignment surgery;
  • A young woman who is starting public health school in the fall;
  • How a parent deals with mental health issues with her kids.

I am thrilled that these stories are fresh and important accounts of what transpires in our healthcare system. Some bloggers will be guest bloggers here and I will swap posts with them, other stories, I will tell.

This post is short. Writing the macular degeneration drug story took a lot of energy and I have to pace myself. Since I am aiming to post each day this month, you can expect a few stories like that each week, but certainly not every day. I am also interested in any stories that you have to tell.

Is There An Oncologist In the House?

Imagine, if you will, that you have early (stage 1b) lung cancer, that you think you have good insurance, and that you cannot find an oncologist to follow you. That’s the story of a 55-year-old man, who asked that I call him “LC1.”

About one year ago, LC1 had a lung biopsy at an academic teaching hospital. The surgery “got it all,” according to LC1’s surgeon, and further treatment was unnecessary. That meant, chemotherapy was not in the cards and that he would be followed with regular scans to be certain that there was no recurrence. LC1 remained in the hospital for about a week to recuperate. Just moments after they took his chest tubes out and LC1 was preparing to go home, an oncologist came to his bedside, leaving this nugget: “I’ll see you in a few weeks. We need to talk about chemotherapy.”

LC1 was astounded. How was it that he was there for days on end and he and his family thought that the worst was over? LC1 could not comprehend why his surgeon and oncologist were on a completely different page. As he learned later, his cancer was categorized as stage 1b nonsmall cell lung cancer, a category of early lung cancer where there is disagreement about the benefits and risks of chemotherapy. The chemotherapy regimen is rough.

Initially, LC1 felt energized about going home. Now, after the oncologist sauntered in and out of the room urging chemotherapy, LC1 became rapidly depressed. He could not shake it in the first few weeks after going home. What was notable about the oncologist’s comment was that he barely put it out there and then he left the room.
LC1’s insurance paid for a visiting nurse to come to the house. She taught him to walk again and changed his dressings.  He took some pain medication. When he could, he did what he could to learn about lung cancer chemotherapy.

No mental and emotional preparation seemed to be enough for their return visit to the first oncologist. He was dogmatic and warned LC1 and his family that if he chose not to have chemotherapy, he would be flirting with death. The visit was difficult.

A Second Opinion in the Same Town

A close friend urged them to get a second opinion. Initially they balked at the possibility of seeing anyone else. It felt like information overload and LC1 could not imagine how you juggle more possibly conflicting opinions.  With the help of a friend in the medical field, LC1 set up his appointment for a second opinion and also considered switching to the second oncologist at a different hospital than where he had his lung biopsy. With the appointment in hand, LC1 and his family began reading everything that they could find on the pros and cons of lung cancer chemotherapy. LC1’s brother joined a lung cancer support group on line and asked questions of people who had undergone lung cancer chemotherapy.

When LC1 went for his second opinion to a highly regarded lung cancer program, he was relieved that the second oncologist did not scream at him to have chemotherapy, or else face the consequences. He also took comfort in a fellow warmly urging the family to not just consult with them, but hopefully transfer all of LC1’s care to them.
In comparison with the first oncologist, the second one explained the pros and cons of the lung cancer chemotherapy regimen that he would choose for LC1. What was left outstanding at the end of the visit was the second oncology and pathology team’s review of LC1’s slides and medical clearance before starting chemotherapy.  But one comment took LC1 by surprise. Near the end of the visit, the oncologist asked: “What did the first guy say?” When LC1 told him that he recommended chemotherapy, the second doctor said emphatically: “Well I am going to say the same thing.”

LC1 wondered why it mattered what the first oncologist said, but he put that aside. LC1 admired the way that the oncologist spoke with him and thought that he probably would switch over to him. He began to request his slides so that the second group of pathologists could look them over. (This is frequently the case when a second group is evaluating you.)
A few weeks later, LC1 returned to the second oncologist. He had had good days and bad ones. He had read of people who felt that they got through the rough chemotherapy and days when he read about side effects that made him cringe.

The Search for a Follow-Up Oncologist Continues

His return visit to this oncologist took the wind out of his sails (as if the stitch in his side from the lung biopsy was not enough). To his surprise, the oncologist told him that because of several medical criteria, LC was unsuitable for treatment. Tumors like his did not respond well to the specific chemotherapy agents. Also, his personal biology made him more vulnerable to toxicity.  LC1 was also an unlikely candidate for any cancer clinical trials because his unique biology made him unsuitable.

What really flabbergasted him, though, was what followed. The oncologist told him flatly:“What this facility is about is really about treatment.” Since LC1 was not a candidate for treatment, the oncologist said: “Why not go back to the oncologist whom he saw first?”LC1 was dumbfounded. Can facilities or doctors just tell you to leave, that they won’t follow you? Is it all about chemotherapy fees, big business, or suitability for clinical trials? Was this ethical? How could this be acceptable?”

LC1 entered a dark period. He no longer had an oncologist and it was unacceptable to return to the first fear-mongering oncologist.  He and his wife did not know where they were. Some of LC1’s first impulses were to just screw it, look into alternative and complementary medicine. Mainstream American medical system in this large city had nothing to offer them. LC1’s friend asked a cancer expert in another state for recommendations. Somehow, something had to happen.

Fortunately, LC1 got a name from an out-of-state oncologist of an oncologist who was highly regarded. This American city has a huge number of oncologists. The system does not need to train more. A few weeks later, LC1 went to see oncologist number 3. For the first time in this saga, LC1 thought that he had finally stumbled upon an oncologist with whom he could work. The oncologist was fine following him and offering no chemotherapy. LC1 had his follow-up scans done at the new facility on the schedule that is widely used across the United States. Now in good hands, LC1 and his family relaxed.

Then, just before their second visit with the oncologist was set up, LC1 received a letter stating that his new oncologist was leaving to do research. LC1 could be followed by a new oncologist at the same facility that LC1’s oncologist highly recommended. So 9 months after his entire lung cancer saga began, LC1 was back to square one.  He went to the new oncologist and was pleased.

Of the four oncologists that he had seen so far, LC1 liked this one the best. He was down to earth, knowledgeable, and easy to talk with. He and his family relaxed again. Then the news came:  oncologist number-four did not take his insurance.

Exactly how many oncologists, if any at this large teaching hospital in a large American city, would accept his insurance and be willing to follow him, is currently unknown.

His insurance is one thing. LC1 considered himself fortunate that each year, he had the good fortune to review what his employer presented as a “cafeteria of health insurance options.” For years, his insurance met his needs when he was well. But he has entered new terrain. Furthermore, when he next reviews health insurance options, LC1 doesn’t know whether any other plan will have oncologists.

Recently, articles have shown how difficult it is for the poor, people on Medicaid, and the uninsured to find specialists.It is unconscionable, in my opinion, that people cannot get care. This story suggests that even so-called “good”insurance may offer little protection for sick people.

Do you think doctors and hospitals should have the right to pick their patients? Have you experienced anything like this?