You can pay to jump the queue: Insurance delays for Hodgkins Disease treatment

Prof. Mark Kleiman’s story:

Now that Michael Moore's SICKO has raised again the question why the Canadian health care system functions so much better than ours, supporters of the current mess have gone back to chanting: Hip replacement! Rationing! Hip replacement! Rationing! Markets! Markets! Markets! Markets! Sis, boom bah! or words to that effect.

The response, of course, is that rationing, including rationing by queuing, is just as much a feature of the U.S. system as it is of competing systems. And while waiting for a hip replacement sounds pretty bad, there are worse things to have to wait for. Take it from me.

In the spring of the year 2000, after several months of what in retrospect was intolerable negligence both by me and by my internist, I was diagnosed with cancer. I had fancy-dancy health insurance through my employer, which as it happens also owns one of the world's dozen best medical centers.

The diagnosis of cancer, based on symptoms plus the chest X-ray that should have been done several months earlier, was made very early in May. By then, I had dropped forty-some pounds, had almost no voice, couldn't walk more than 30 yards without puffing, and had a resting respiration rate of 20 breaths per minute. My friend Gary Emmett, who made what turned out to be the correct diagnosis a month earlier just by listening to me on the telephone, came out to visit, and told the rest of my friends that if they wanted to see me alive they'd better make their plane reservations in a hurry. (The technical term is "Stage IV-B." Not good.)

But of course you can't treat "cancer." You have to treat some specific cancer. And you can't treat it until you figure out what it is.

That process took just about one full month, a month during which my chances of survival were dropping fairly steadily and the intensity — and therefore the side-effect profile — of the treatment that would be required if we ever got the damned thing figured out was rising in parallel. It would have taken longer — quite possibly fatally longer — if Al Carnesale, whom I'd known when we were both at the Kennedy School, and who by then was the Chancellor of UCLA and thus at some ethereal level responsible for both me and the hospital, hadn't sent a note to the guy who runs the entire UCLA medical area (hospital and medical school). The note politely hinted that it would be at least marginally preferable if my department didn't have to go through the hassle of recruiting a replacement. After that, things speeded up somewhat.

What absorbed that month? Mostly waiting.

After the chest X-ray, I needed to see an oncologist. I couldn't make an appointment until I had the approval of the insurance company for the referral. That took a few days. Getting on the oncologist's schedule took a few more days.

After the oncologist saw me, he wanted a bone marrow sample to send to the pathologists to figure out what the cancer might be. I couldn't make an appointment for the bone marrow procedure until the insurance company approved it. Then I had to wait for the bone-marrow extractor to have time on his busy schedule.

When it turned out that there wasn't enough marrow to test, I needed a lymph-node biopsy. More waiting for an insurance approval and more waiting for an appointment. Having seen the head-and-neck surgeon who was going to do the biopsy, I couldn't have the biopsy right away because the insurance company wouldn't approve it as an in-patient procedure and there was queue for outpatient biopsy operating room time. Anyway, the guy who had seen me didn't have any time free on his dance card for the next several weeks, so he sent me to another surgeon to actually do the procedure.

When I showed up for the outpatient biopsy, the anaesthesiologist took one look at my chart and flatly refused to put me under for the procedure except in an in-patient setting, on what seemed like the reasonable grounds that otherwise I could easily die on the table. That meant, of course, more waiting for another approval and another appointment.

All this, let's recall, with the Chancellor breathing down the neck of the boss of the medical area on behalf of a full professor at the university that owns the hospital. So my experience with the system was probably about as good as it gets except for corporate executives using places like the Mayo Clinic or family members of people on the boards of directors of hospitals. (Apparently it's generally understood that if you stump up enough in the way of contributions to get on the board of the hospital, you're entitled to priority care; that's how not-for-profit hospitals raise capital.)

It was only later that I discovered why the insurance company was stalling; I had an option, which I didn't know I had, to avoid all the approvals by going to "Tier II," which would have meant higher co-payments. The process is designed to get very sick or prosperous patients to pay to jump the queue.

I don't know how many people my insurance company waited to death that year, but I'm certain the number wasn't zero. As I say, in my case it was a damned close-run thing. (Fortunately, the eventual diagnosis was of a curable cancer, and the actual treatment I got once the diagnosis was made was prompt, well-executed, and entirely successful.)

That's on top of the procedures the insurance companies simply refuse to pay for at all because some clerk decides they aren't "medically necessary," which for most people means that the queue for that service is of infinite length. So can we hear at little less about how long Canadians wait to get their hips replaced?

Now I might be inclined, if I ran the zoo, to have a system that used less rationing of all kinds. It's true that one key to reducing health care costs is to deliver less of the very expensive forms of health care: ideally, less of that portion of health care that does harm, or at least doesn't do enough good to justify its costs. But I'm not convinced that cost containment — as opposed to the related but conceptually distinct question of how to keep health care costs from financially ruining individual households and companies, and how to prevent the search for health coverage from distorting labor-market decisions — deserves as high a priority on the list of health care reform goals as most health policy wonks give it.
It seems to me likely that most health care is, in Robert Frank's terms, "non-competitively consumed," while much of the rest of household spending is on goods that are competitively consumed. If so, it's not easy to see the case for spending less on health care so we can all spend more money, in the course of our shorter and sicker lives, trying to live in bigger houses, have classier consumer electronics, drive faster cars, and wear fancier clothing and wristwatches than our brothers-in-law.

But however you come down on that argument, the claim that replacing the current insurance mishmash with a better-integrated payment and decision-making process would mean more rationing, or even more rationing-by-queuing, is the sort of palpable falsehood that people who are perfectly honorable in real life are only too willing to utter in ideological conflict, especially if paid to do so. Under a single-payer system we'd have an idea who was waiting how long for what, while under the current system no such data are available. In all my waiting, I was never in a formal "queue," and if the cancer had gotten me before the pathologist figured out what it was no one would have counted that death as the result of rationing. But only in wingnut health-policy fantasyland is not measuring a problem the same as not having a problem.

Update: I had Hodgkins Disease, and got the right treatment for it. But patients with the more common and less curable non-Hodgkins Lymphoma seem to mostly be getting the wrong treatment, due to the financial incentives built into the current system of paying for health care.

Advice for patients awaiting insurers’ approval: Ask your insurer what alternatives you have.

Read another of our insurance company stories, or read more fromProf. Kleiman’s blog.

She can read her own MRI: Six-time cancer survivor

Lois Ferrarra beat cancer. Six times. In a span of two decades, doctors diagnosed Hodgkin's disease, then lung, thyroid, vulvar, breast and skin cancers.

Mrs. Ferrara has endured more than a dozen surgeries and countless medical treatments. And though none of the cancers stemmed from another, she has emerged each time cancer-free.

"Hello, I'm still here," she said at a recent gathering to celebrate her 20th year of survival. "It's great to be here. Heck, it's great to be anywhere."

Mrs. Ferrara's doctors have marveled at her uncanny ability to repeatedly fight off – and laugh off – the diseases.

Mrs. Ferrara, 49, is training for the Breast Cancer 3-Day Walk this fall. She's also using her experiences to counsel those who have been diagnosed with cancer or are recovering, walking them through the process of choosing doctors and procedures.

Friends and doctors say it's her fierce determination that attracts fellow survivors to Mrs. Ferrara. That, and her way with encouraging words.

"No one is going to fight your cancer like you will," she said. "I often wonder if that is why I am still here, to equip others for the battle."

At 29, Mrs. Ferrara learned she had Hodgkin's disease, a lymphatic cancer. She remained cancer-free for 11 years, but then developed the other cancers.

All of the cancers were caught in the early stages, but three almost went undiagnosed. During a routine gynecological exam her physician felt a lump on her throat. On a hunch, she went for further testing.

"My inner voice is routine," said Mrs. Ferrara, a Richardson, Texas resident. "I'm not sure you can teach someone to hear it, so you have to be thorough."

Mrs. Ferrara's initial biopsy was not diagnosable. She opted for surgery to remove it, losing part of her thyroid. While on the operating table, her surgeon found a baseball-size tumor on her esophagus.

Dr. Dan Meyer, a cardiothoracic surgeon at UT Southwestern Medical Center, believes there is something in Mrs. Ferrara's genetic makeup that makes her susceptible to tumors. But he also believes her attitude is a major factor in her ability to survive. Dr. Meyer remembered a time when Mrs. Ferrara came in for an office visit. She commented on how another patient was having a bad day and how she felt for that person.

"This is Lois, a young woman a day away from a mastectomy, never spending time reflecting negatively on her own existence but just focusing on the positives in life and trying to help others choose this vision," he said.

"She is unique in this way, and it must have an impact on her ability to fight against these multiple different cancers."

Mrs. Ferrara jokes that she's become a "professional patient" who carries a document explaining all of her procedures to attach to patient forms.

She said, "I write on the form, 'You don't have enough room. See attached.'"

Mrs. Ferrara's personality is reflected in everything from her crystal blue eyes and brightly-colored shirts to her tiny, vintage, one-door BMW.

She credits another component to her survival to her charismatic, fun-loving husband, Richard. Before her recent surgeries, he wrote messages on the bottom of her feet.
For her celebration, he wrote, "Life. I love you." The process never ceases to make them laugh out loud. During her last surgery in January, a hysterectomy, the message read, "Git'r Done!"

Dr. Elizabeth Jekot has been the recipient of one of these messages. Before becoming her doctor, Ms. Jekot was a friend of Mrs. Ferrara's. The two met through a literacy board.
She started seeing Dr. Jekot, who founded a breast imaging center in Richardson, in September after her second breast cancer diagnosis. She too is a breast cancer survivor. And she too is inspired by Mrs. Ferrara.

"Talk about talking to the most educated patient," Dr. Jekot said. "She could read her own MRI."

Mrs. Ferrara had never even had a stitch until her first surgery. She never suffered a broken bone chasing her older brothers and jumping off roofs as a child.

"Don't tell me I can't" is something she has been saying her entire life, she said.

She said there were times she almost let mortality sink in, but she didn't give it much thought. Instead, she got busy.

Today, Mrs. Ferrara is disease-free. She says she believes that cancer is her nemesis and that it could eventually take her life. Until then, she will keep fighting the fight for herself and others.

She sums her life up in singer Paul Anka's big band version of It's My Life. "I have cancer, but it's not my life," she said.

The four months of daily radiation treatments that cured her first cancer could be what has caused her other malignancies. Her immune system has been weakened by the treatments.
"The cure is killing me," she said. "But if I had not had ... [radiation], I wouldn't be here."
If not for her humor she might have given up, she said. A positive attitude is one key to survival, and sharing it gives her reason to live.

Friends and family diligently follow her daily blog on training for the Breast Cancer 3-Day Walk this fall. Most of the money raised will go to Susan B. Komen for the Cure.

Read another of our cancer survivor stories, or read Mikki Kirby’s source story.

All patients should know their options: Lymphoma drugs Bexxar and Zevalin

Linda Stephens had late-stage non-Hodgkins lymphoma, a cancer of the immune system that attacked her white blood cells, and a grim prognosis. Chemotherapy proved both difficult and ineffective. Less than a year after her diagnosis, the disease was spreading, and had involved every lymph node in her body. Now, at age 58, she has been cancer-free for seven years. Betsy de Parry (cancer-free for five years) and Dan Wheeler (cancer-free for three years) have similar stories. All had received Bexxar or Zevalin, which are costly, rarely used drugs in a new class, called radioimmunotherapies.

Clinical trials to show whether the drugs extend patients’ survival rates are nearing completion. Early studies showed the drugs have significant advantages over Rituxan, the mainstay drug for these patients. When it reviewed the clinical trials for Zevalin in 2001, the FDA found that "as compared with the Rituxan therapy, Zevalin was associated with a superior overall response rate."

Linda, Dan and Betsy are among the lucky few who receive Bexxar or Zevalin: only one tenth of the patients who would be suitable candidates for these drugs actually receive them.

Financial incentives discourage their use. Infusions of chemotherapy, Rituxan, and other drugs form the primary source of income for most oncologists. But Medicare and private insurers do not pay the oncologists for prescribing Bexxar and Zevalin, since these drugs must be administered in hospitals.

Also, most oncologists outside academic hospitals treat many different cancers, and may not be familiar with these drugs, which are used specifically for certain kinds of lymphoma.

Betsy de Parry says, "It’s not that I believe that radioimmunotherapy is right for everybody. I just think that all patients should know their options."

Non-Hodgkins lymphoma is the fifth most common cancer in the U.S., with 60,000 new patients diagnosed each year. About 20,000 people could be suitable candidates for Bexxar and Zevalin.

Advice for lymphoma patients: Learn more from the Lymphoma Research Foundation. And keep an eye out for news of the completion of the clinical trials.

Read one of our lymphoma survivor stories, or read more from today’s New York Times article by Alex Berenson.

Satisfied users of medication reminder watches: Patient compliance

These three testimonials appeared on a vendor’s web site, so take them with a grain of salt:

C.C.’s Testimonial:
Your company was very helpful in finding a good electronic reminder for my Mother. She is Diabetic and needed help in trying to remember to take her Insulin at the right time. Before she had the watch that we eventually bought from epill.com, we had experienced a couple of spells where her blood sugar required us to call 911 in the middle of the night. Needless to say, this caused my Father and the rest of our family great stress. Since then, she hasn't forgotten to take her Insulin and actually enjoys the vibrating watch that we got for her. With her hearing problems, she never would have had the same degree of success with an audible alarm. Your complete and informative website directed us to the right alarm for her.

Thanks so much! We will enjoy the watch and having my Mom around for hopefully many years to come.

K.P.’s Testimonial
The watch (e-pill MeDose) is a godsend. Prior to using the watch my grandson had approximately 64 seizures in a 2-month period. Since using the watch he has had only 2 seizures in a 2-month period.

T.M.’s Testimonial
Thank you for creating this product (MD.2). My mother is able to stay at home and take her medication thanks to this pill machine. She was recently declared cognitively unable to take her medications from a traditional pill box.

The visiting nurses have commented on how much better she is doing now that she is getting the correct medication at the correct time. Prior to having your specialized pill machine, my mother was inadvertently taking medication from the wrong day or time or getting confused and trying to put the medication back into the regular pill bottles and fill the pill boxes herself.

This machine has eliminated all of that confusion for her and allows her to live at home and take her medication without supervision.

Thank you for giving my mother additional days/months/years of independence. I know at some point her Parkinsons will get the best of her, but for today, the machine [e-pill Monitored Automatic Pill Dispenser] allows her greater independence. Thank you.



Advice to family members with a forgetful loved one on medication: Consider buying a device like the ones described above.

Read one of our patient compliance stories.

I’ve been robbed since I was 49: Malpractice - surgical error

An operation nearly two decades ago left her incontinent and in pain, shuffling from one medical appointment to the next in search of a way to repair a hole in her bladder. She says several subsequent surgeries and procedures failed to correct the problem.

For the past 17 years, Frances Borrow has lived with a plastic bag constantly strapped to her stomach that collects her urine, the legacy of a 1990 hysterectomy during which her bladder was accidentally sliced. "I've been robbed since I was 49 years old. From then on, it's been a nightmare. I was a very outgoing, happy person. It was like my whole world turned around. Nobody should have to live that way."

Frances is one of more than three dozen women who now say they suffered lasting physical and emotional injuries after surgery by a Scarborough obstetrician and gynecologist.

They all wonder if they could have avoided years of hardship had they known about his surgical complication rate, a string of malpractice suits against him and a pattern of patient complaints.

The documents, filed as part of a $500,000 lawsuit by one former patient in 2003, show that surgeon had complication rates for total abdominal hysterectomies (the surgical removal of the uterus by an incision in the abdominal wall rather than the vagina) of 30% in 2000, 30% in 2001, 9% in 2002 and 10% in 2003.

A 1992 Ohio study of 160,000 hysterectomies found a complication rate of 9% was the average for that operation.

The Ontario provincial government announced this week it will require hospitals to report unexpected death rates and infection rates alongside the wait times posted on a government website for procedures in five key areas, to be posted by Spring, 2008.

The government will not, however, publish the complication rates of individual surgeons.

Advice to patients about to undergo surgery: Find out the surgeon’s complication rate first.

Read another of our surgical error stories, or read the source story by Robert Cribb and Tanya Talaga on medical secrecy.

They discovered something in common: Hepatitis from surgeons

A few years ago, two Long Islanders with hepatitis C met in a support group and discovered that they had something in common: both had become infected with the virus after open-heart surgery – by the same surgeon.

Public health investigators, who were looking into one of the two cases, had not asked the patient’s surgical team members whether one of them might be infected. After they did, they eventually determined that the surgeon was infected and that he was the inadvertent source of both patients’ infections, and that of at least one other patient.

Surgeons often cut or nick themselves. Surgeons in training get eight needle sticks in their first five years, on average, according to a recent survey in the New England Journal of Medicine. In that way, they can catch some viruses that spread from blood-to-blood contact, like hepatitis and HIV.

Advice to patients: While the risk is remote, if you like, you can ask the surgeon if s/he is infected with any blood-borne infection.

Read another story on the benefit of support groups for heart surgery patients, or read Roni Caryn Rabin’s source story in the July 3 issue of the New York Times.

I did not want to scare her: Misdiagnosis, medication errors, and patient privacy

Susan Stern’s story:
Two years ago, I drove myself to a hospital Emergency Room with only moderate pain in my right and left shoulder. Since I am over 70, I was immediately given nitroglycerine, and the dose was repeated three times during my Emergency Room stay.

I was brought two more times to the E.R., each time with more severe pains. I was then correctly diagnosed with pericarditis. The last hospital wanted to admit me, but I signed myself out against doctor’s advice.

When my daughter called at my request, the doctor told her I might die unless I stayed at the hospital. I needed my daughter’s involvement, since I could not drive myself to see my doctor, but I did not want to scare her, as she was the mother of a toddler and pregnant with her second child.

I told my doctor that I did not want anyone telling my family that I might die. I was told that my only choice was to prohibit the doctor from giving any information to my family or having no control whatever over what was said.

I am now enjoying excellent health. I put a letter in my file instructing the doctor to share all dire warnings only with me.

Details of a person’s illness should be kept private from kin if the patient is conscious and does not want certain details revealed.

Advice: Write a letter about your preferences and have your doctor put it in your medical record.

Read one of our patient privacy stories.

Source: Susan’s letter to the Editor appeared in the July 9 New York Times.

It's not 20th century: Electronic medical records and patient waiting times

Barbara Duck:

"I've always loved [my medical practice], they treat you like family," says patient Josh Dryman, a 33-year-old who lives in Laguna Niguel, California. "But I had to wait an hour in the lobby and wait in the exam room another half-hour. Now [that they have an electronic medical record], when you go in, they get you in right away and the staff seems a heck of a lot friendlier."

Most of the time it is pretty easy to detect once you walk in to a lobby of a practice, those still using paper seem to possess an atmosphere of chaos to some degree, and the entire staff appears rushed and somewhat stressed, whereby those offices using electronic records have much of this information at their fingertips on the computers, thus less physical movement in pulling charts, looking for faxes, etc. and this in itself allows the office to focus better on patient care and not chasing information.

"The average consumer takes it as a given that doctors have these systems in place," says Peter Lee, chief executive of the Pacific Business Group on Health, an employer coalition based in San Francisco. "They don't know how much medical care today is not 20th century, let alone 21st century, in terms of how much doctors rely on paper instead of computers."

Nationally, only about 20% of physician offices are computerized; the rest still rely on notoriously inefficient paper charts. But computers are an easy benchmark for quality. They can help a doctor not just keep track of files, but also send out prescriptions accurately and quickly, get lab results inserted into the record automatically and be reminded what the scientific evidence suggests is the next best step with a patient.

Advice: In choosing a physician, ask whether s/he uses an electronic medical record to look up lab results, allow lookup of your record during evenings and weekends when you are sick, reduce medication errors, foster email communication with patients, and generally join the 21st century.

Read a story on an exemplary health care provider with odd and useful electronic medical record recommendations for patients, or read more from the source blog post.

Take your cues from him: Patient’s role in medical decision-making

Granny Tiger (not her real name, I assume) wrote perceptively about the role that patients want in medical decision-making. Her comment responds to Dr. R.W. Donnell’s thought-provoking blog post about the ways doctors can think; both appear below.

Dr. R.W. Donnell:
We should allow patients to be involved to the extent they wish. But I would caution that unless we apply rigorous principles of evidence-based medicine to the discussion with the patient, the decision making process becomes flawed. So if patients’ decisions need to be evidence-based just as doctors’ decisions do how do we bring that about? Is there enough time in our busy practices to do it?

Consider these case examples. You are counseling your patient about upcoming knee replacement. You plan to give enoxeparin for DVT prophylaxis. How do you inform the patient? Sure, you know that it’s the right thing to do and all the experts recommend it, but the patient deserves evidence. So, you do a Pub Med search (or, somewhat more easily, consult a filtered resource such as Up To Date) and cull out the studies you critically appraise as valid and applicable to your patient. In order to advise your patient on the magnitude of benefit of the proposed treatment you look for, or calculate the absolute risk reduction (ARR) for the proposed treatment as well as the absolute risk increase (ARI) for bleeding. In order to translate this into language the patient can understand you then, from the absolute risk reduction for DVT and the absolute risk increase for bleeding, calculate the number needed to treat (NNT) and number needed to harm (NNH) respectively. You then have the discussion with the patient, modifying it as necessary to take into account any unique attributes of your patient which might increase bleeding risk. If the patient is to be discharged early after the surgery you must also provide information concerning the cost of continued enoxeparin at home, taking into account the patient’s financial condition and payer sources. Then you ask the patient and any concerned family members if they have questions, answer them as they arise, and document your discussion in the medical record. Time consuming, eh?

Of course if this is not your first patient to receive enoxeparin for orthopedic prophylaxis maybe you’ve done the drill before, but the discussion still takes a lot of time….

Grannytiger’s reply:

My goodness. If my physician went to all that trouble for me, I'd require resuscitation from the shock. But to tell you the truth, such extreme conscientiousness -- while I applaud it -- is not only impractical in terms of time (yours!) but also overestimates by a long shot what most patients would expect in terms of empowerment.

We certainly want to be informed but there are much less time-consuming ways to help us achieve it. Offer a pamphlet on DVT prophylaxis to the knee replacement patient. You probably already have a pretty standard informed consent "spiel"; give the patient that, and then take your cues from him. If the situation warrants, make a quick diagram of his anatomical problem and what the proposed treatment will do. If he is one of the relatively few patients who really seem to need the specifically tailored information you describe, fine. But most of us will not.

As long as we know you are open to answering questions, even ones we think of after we leave the office, most patients feel that we have a role in the decision-making process.

Advice to doctors with Web-savvy patients: To get a more useful discussion next time with patients, tell them the evidence-based web site/s you respect.

Read one of our informed consent stories, or read more from the source blog post by Dr. R. W. Donnell.

Charity born out of tragedy: An undiagnosed baby

Sometimes, out of the saddest situations, heroes are born.

At 9 pounds, 2 ounces, Emma Patmore looked healthy when she was born on Feb. 2, 2006. But her mother Tara, a neonatal Intensive Care Unit nurse, knew something was wrong.

Yet doctors never were able to make a diagnosis, even during Emma’s 16 weeks of hospitalization.

Emma passed away in December 2006, the day after her first photo with Santa.

Originally, her parents had launched the Emma Patmore Foundation as a way to help cover medical costs. Then "it just exploded into support, unbelievable support from family and co-workers," Tara said.

After Emma died, the Patmores decided to keep the foundation going to help others in similar situations. Tara connected online with others whose children had undiagnosed illnesses. Money from the Emma Patmore Foundation will support the families of those children or Camp Victory, a Hershey camp for children with ventilators.

Tara hopes Emma's story also helps educate others. There isn't a lot of awareness of undiagnosed illnesses, she said. "Everyone can't believe this can happen," she said.

About one-third of special needs children have no diagnosis, according to the organization Syndromes Without A Name.

Advice: Share Tara’s story.

Read one of our hero stories, or read more from the source article by Angie Mason.

I was not a threat to anyone: Tuberculosis miscommunication

Andrew Speaker, a young, newly married personal injury lawyer, had just found out he had a form of tuberculosis that is resistant to multiple drugs that are usually effective. He felt fine – but he knew he’d need a lobe of one lung removed, and would need IV medicine almost every day for two years or so. But he thought at the time, "I was not a threat to anyone – that was the impression I was under."

The Centers for Disease Control told him they preferred that he not leave the country. He may have been told he was contagious or slightly contagious, but not highly contagious.

Andrew flew on a plane to Italy, and then returned to the U.S., later to go to an isolation room in a Denver hospital.

Now this has become the subject of intense publicity and formal investigation about the role of CDC, the Department of Homeland Security and patients about quarantining tuberculosis patients.

It seems from an interview transcript that Andrew had been told of his disease and contagiousness, but downplayed its significance, perhaps from wishful thinking. He is a highly educated person, and his father-in-law is a TB researcher at CDC. Even bright and well-informed people like Andrew sometimes don’t listen well when the stakes are so high and so personal.

Such miscommunication between patients and health care workers and providers often occurs. Perhaps the CDC staff spoke too indirectly, trying to be polite, rather than prescriptive, in saying they “prefer” Andrew should not get on a plane. Their indirect communication may have muddied their message. Or maybe Andrew just didn’t hear them.

Advice: Tape-record your doctor’s appointments so you can be sure to hear everything clearly.

Thanks, Dr. Vicki Rackner.


Read one of our patient compliance stories, or read more from the CNN transcript of an interview from an isolation room in a Denver hospital.

Patients’ Bill of Rights

In November 1997, President Clinton's Advisory Commission on Consumer Protection and Quality on the Health Care Industry, in an Interim Report, issued the Patients' Bill of Rights and Responsibilities. Donna E. Shalala and Alexis M. Herman co-chaired the 34-member Commission.

The Patients' Bill of Rights and Responsibilities has three goals: to strengthen consumer confidence that the health care system is fair and responsive to consumer needs; to reaffirm the importance of a strong relationship between patients and their health care providers; and to reaffirm the critical role consumers play in safeguarding their own health. The Commission articulated seven sets of rights and one set of responsibilities:

The Right to Information. Patients have the right to receive accurate, easily understood information to assist them in making informed decisions about their health plans, facilities and professionals.

The Right to Choose. Patients have the right to a choice of health care providers that is sufficient to assure access to appropriate high-quality health care including giving women access to qualified specialists such as obstetrician-gynecologists and giving patients with serious medical conditions and chronic illnesses access to specialists.

Access to Emergency Services. Patients have the right to access emergency health services when and where the need arises. Health plans should provide payment when a patient presents himself/herself to any emergency department with acute symptoms of sufficient severity "including severe pain" that a "prudent layperson" could reasonably expect the absence of medical attention to result in placing that consumer's health in serious jeopardy, serious impairment to bodily functions, or serious dysfunction of any bodily organ or part.

Being a Full Partner in Health Care Decisions. Patients have the right to fully participate in all decisions related to their health care. Consumers who are unable to fully participate in treatment decisions have the right to be represented by parents, guardians, family members, or other conservators. Additionally, provider contracts should not contain any so-called "gag clauses" that restrict health professionals' ability to discuss and advise patients on medically necessary treatment options.

Care Without Discrimination. Patients have the right to considerate, respectful care from all members of the health care industry at all times and under all circumstances. Patients must not be discriminated against in the marketing or enrollment or in the provision of health care services, consistent with the benefits covered in their policy and/or as required by law, based on race, ethnicity, national origin, religion, sex, age, current or anticipated mental or physical disability, sexual orientation, genetic information, or source of payment.

The Right to Privacy. Patients have the right to communicate with health care providers in confidence and to have the confidentiality of their individually-identifiable health care information protected. Patients also have the right to review and copy their own medical records and request amendments to their records.

The Right to Speedy Complaint Resolution. Patients have the right to a fair and efficient process for resolving differences with their health plans, health care providers, and the institutions that serve them, including a rigorous system of internal review and an independent system of external review.

Taking on New Responsibilities. In a health care system that affords patients rights and protections, patients must also take greater responsibility for maintaining good health.

Advice: Know your rights, and use them.

Read one of our access stories, or read more from the government source on your specific Medicaid and Medicare rights.

Birthday parties have been cancelled: Secrecy through HIPAA

An Emergency Room nurse in Illinois told Gerard Nussbaum he could not stay with his father-in-law while the elderly man was being treated for a stroke. Another nurse threatened Gerard with arrest for scanning the older man’s medical chart to prove to her that she was about to administer a dangerous second round of sedatives.

Both nurses claimed—wrongly--that the Health Insurance Portability and Accountability Act (HIPAA) prohibited them from helping. But Gerard knew better, as a health care and HIPAA consultant, so he stood his ground.

Recent government studies have found some health care providers apply the HIPAA regulations overzealously, blocking family members and caretakers from learning useful information. Birthday parties in nursing homes in New York and Arizona have been cancelled for fear that revealing residents’ dates of birth would be illegal.

In reality, HIPAA says health care providers may share information with others unless the patient objects, but does not require them to do so. Their disclosure of information is voluntary; the law leaves them broad discretion.


Advice to patient advocates: Stand your ground with health care providers if you need some information to help your patient.

Read another of our privacy stories, or read Jane Gross’ source story in today’s New York Times.

She couldn’t revive the teen: A tired nurse

Exhausted at the end of her third overnight shift in as many days, the nurse left the Veterans Administration Medical Center in Minneapolis and drove home.

She later told police she had worked 12 1/2-hour shifts, from 7:30 p.m. to 8 a.m., three days in a row. In her daylight hours, she had slept five or six hours one day and little more than three the next.

 And she would tell police she tried her best but that there was nothing she could do to revive the teen who was struck by her car and then thrown to her death on July 27, 2006. Less than a mile from her Farmington home, the nurse, age 40, allegedly fell asleep at the wheel of her car near a busy Farmington, Minnesota intersection. The car jumped the curb and crashed into 18-year-old Jacquelynn Devney as the summer worker weeded a sidewalk trail. A Dakota County coroner later determined that Jacquelynn, who was weeks away from starting college, died instantly.

In May, the nurse pled guilty to a misdemeanor charge of careless driving. A judge sentenced her to 100 hours of community service.

Advice: If your nurse is tired, ask the hospital’s Ombudsman or Patient Advocate for a different one.

Read another of our stories about a tired nurse, or read the source blog post.

He avoided them: Testicular cancer

Dr. Sandra Scantling’s story of her brother’s legacy:

I wasn’t always an only child. I once had a brother, Stephan Wolfe. He died of testicular cancer when he was only 35.

Stephan was nearly 6-foot-4 with an enormously powerful frame. Everything about him was large—his smile, his generosity and his heart. He seemed invincible, and he was the younger sibling. He was never sick a day in his life—or so he claimed.

He was a devoted husband and a terrific brother—but he did have one tragic flaw: He was afraid of doctors and hospitals. He avoided them.

I found out much later that he had a painless swelling in his testicular area that he apparently ignored for months. In the end, this avoidance probably cost him his life.

Stephan had his cancerous testicle removed (an "orchiectomy"). His lymph nodes were clean, and the pathologist determined the cancer—seminoma--was highly curable.

He told me that he only needed a year’s follow-up and no further treatment. No radiation. No chemotherapy. He asked for my support. "It’s my life, Sandy," he said.

After his death, I learned that he had refused further treatment, insisting in his own stubborn way that he would be fine. He didn’t want to become a cancer patient—so he chose to do it his way.

He only lived three more months.

Suffering is witnessing and supporting someone you love make decisions—or fail to make decisions—that affect the length or quality of their lives. The survivor guilt is especially painful with all of the unanswered questions of "why" and "if only."

Advice to siblings: Make sure your brothers know the signs of testicular cancer; see http://tcrc.acor.org/tcexam.html.

Pay attention to change of any kind:
Any enlargement, or significant shrinking, of a testicle;
A feeling of heaviness in the scrotum;
A dull ache in the lower abdomen or groin;
A sudden collection of fluid in the scrotum;
Pain or discomfort in a testicle or scrotum;
Enlargement or tenderness of the breasts.


Read a much happier story about testicular cancer, or read Dr. Sandra Scantling’s source story in the July 1 Hartford Courant.

She turned her life around: Drug-free years and a medication error

Sandra Kenley worked for 11 years in a newspaper mailroom as a legal permanent resident of the U.S., having come from Barbados more than 30 years ago. But then drug addiction derailed her life. She was convicted of drug possession in 1984, and in 2002 for trying to buy a small amount of cocaine—another misdemeanor.

But then she turned her life around, after probation and treatment. She completed a nursing course, and got legal custody of her baby granddaughter, Nakita.

She returned to visit Barbados in 2005 to show off her grand-daughter, then one year old. On returning with Nakita, at Washington’s Dulles Airport, an airport database showed the convictions, and she was ordered to meet with an immigration inspector.

At the meeting, she told her story, and showed she was taking blood pressure medication and was scheduled for surgery. The inspector arrested her, as her two convictions made her subject to exclusion from the U.S.

She was imprisoned in Pamunkey Regional Jail in rural Hanover, Virginia. She died there a few weeks later, having complained that she had not been receiving her blood pressure medication. An autopsy attributed her death to an enlarged heart from chronic high blood pressure ("hypertensive disease").

Sandra was one of 62 immigrants to die in administrative custody since 2004, according to Immigration and Customs Enforcement. Immigration detention is the fastest growing form of incarceration.

Advice to family members of medical error victims: Tell your story to journalists and bloggers to help warn others.

Read another of our detainee stories, or read Nina Bernstein’s source story on the front page of Tuesday’s New York Times.

Gitmos across America: Drug error death of a detainee

Abdoulai Sall, 50, a Guinea-born taxi cab mechanic in Washington, DC, with no criminal record, died in detention last December.

Abdoulai, whose boss of 17 years had sponsored him for a green card, was at an immigration interview with a lawyer, Paul S. Allen, when he was unexpectedly arrested on an old deportation order — part of a legal tangle left when another lawyer abandoned his case in the 1990s, the lawyer said.

The case file shows that Mr. Allen’s office urged medical intervention for Abdoulai, who had been taking medication for a serious kidney ailment at the time of his arrest. While in detention at the Piedmont Regional Jail in Farmville, Va. he complained that he was not getting his medication and that his symptoms were worsening in a barracks-style unit.

Fellow detainees described him as huddling next to the unit dryer for warmth, barely able to walk. "The medical staff told him they don’t have what he needs because Immigration don’t pay enough money," one detainee wrote.

The accusation was denied by Lou Barlow, the jail’s superintendent, who said Abdoulai had received good care, including a visit to the local emergency room. "We’ve never done anything unethical, illegal or immoral," Mr. Barlow said.

Autopsy results are still pending.

Abdoulai was one of 62 immigrants to die in administrative custody since 2004, according to a new tally by Immigration and Customs Enforcement that counted many more deaths than the 20 previously known.


This is not my America!

I’ve emailed the warden. Let’s see what he suggests families can do to prevent similar tragedies in the future.

Read another of our stories about poor access for our outcasts, or read Nina Bernstein’s source story.

She decided to switch beds: Blood transfusion medical error

Tawnya Brown was awaiting bowel surgery in a Northern Virginia hospital when she decided to switch beds to be closer to the window. The move ultimately killed her. During surgery, Brown mistakenly received two pints of A-negative blood. She was O-positive. An investigation revealed that a technician had drawn blood from the wrong patient. Within minutes of the procedure, the 31-year-old suffered a fatal hemolytic reaction, which resulted in plunging blood pressure and kidney failure.

Blood mix-ups, though rare, are still one of the most feared mistakes in transfusion medicine. "It's the biggest threat today," says Dr. Kathleen Sazama, a transfusion expert at the University of Texas M.D. Anderson Cancer Center in Houston. Even an ounce of mismatched cells can trigger a potentially lethal immune response, causing blood clots and internal bleeding.

Advice: Verify the blood type before you receive a blood transfusion.

Read another of our wrong patient stories, or read Michael Stroh’s source story.

Somehow he's still an optimist: Leukemia patient after medical errors

Before his first trip here, John Kunka was near death — a place he's been many times, before and since. But this morning, the 28-year-old Alberta, Canada, resident is nearly ready to get married here, at an annual event called the Plunge for Patients. These money-raising races, hosted every summer by Morey's Piers, are a big event in his life, which would explain his wedding here — two years after he got engaged at the races.

Here's how important: As Kunka sees it, he may well be alive today and able to marry the love of his fragile life because of the Plunge for Patients and the cause it benefits.

At 13, Kunka's world was built around soccer and school. Then leukemia came along and blew up his world, and his body.

But at first, he appeared to be lucky. The recommended treatment for his rare form of the blood cancer was a bone-marrow transplant, and Kunka's doctors found a good match without having to go far — his sister, Sabrina. Six months after he was diagnosed, he got the transplant and his cancer went into remission. But now he knows his health troubles — which would send him "through hell and back several times," in the words of a woman who knows his history — were just starting.

He developed graft-vs-host disease, or GVHD — his body was rejecting the new bone marrow and attacking his own organs. His skin, for example, grew so tight on his body that "it's like glass," he says.

Early in the fight, he got to go on a trip with a group that sends sick children on dream vacations. His trip was to Disneyland but his dream was interrupted with a rude dose of reality when he bumped into a table in a hotel room — and his crisp-textured skin burst like a glass shattering, sending him to the local emergency room. "That gave me an idea of what to expect for years to come," John says, showing off legs carrying the scars of many such war stories in his 15-year battle within his own body.

His treatments for the condition made his joints deteriorate. He has had three knee replacements and two hip replacements — again, at age 28 — and he expects to need more surgery to replace his shoulders and his ankles and even his knuckles, all because of complications from his disease.

He has shattered a hip and been plagued with blood clots in his lungs. He has had more than 40 operations, and will have even more.

“I've almost died after my last few surgeries,” he says, from overdoses of anesthesia and morphine.

Still, somehow after all that, John Kunka is an optimist.

He hasn't been able to play since he got sick, but he never lost his passion for soccer, and he coaches on crutches if he has to.

Advice to people with chronic illness: Optimism and love might be powerful forces for you.

Read another of our leukemia patient stories, or read Martin DeAngelis’ source story.

She can still recall the day: Lyme Disease misdiagnosis

Diane Blanchard can still recall the day 20 years ago when a tick attached itself to the nape of her neck while she was gardening on Long Island, outside of New York City. She never had the characteristic bull’s-eye rash of Lyme Disease, and her diagnosed was delayed until the next year. Her doctor prescribed a three-week course of antibiotics.

But her symptoms persisted for ten years, until she learned she had a lingering form of the disease. Nine years of on and off treatment with antibiotics followed.

"None of us want to take antibiotics, but if it is the only remedy that is offered at this moment that gives us relief, that allows us to function, then we’re stuck," she said. "We wish we could find a cure. Until we do, we must remain open-minded."

Now she is the co-president of Time for Lyme, an advocacy group.

Advice: Spray your ankles with DEET bug spray before going into the woods, and check yourself afterwards.

Read another of our Lyme Disease stories, or read Stephen Smith’s source story in today’s Boston Globe.

You’ve got to get up and make changes: Activist after mother’s cancer misdiagnosis

As a young woman growing up in segregated Lynchburg, Virginia, Vivian Pinn saw how doctors misdiagnosed a cancerous tumor in her mother's leg, which eventually led to her death.

"I identify with the struggle that women have had to make to get proper health care. I saw a doctor talk down to my mother, telling her that she needed orthopedic shoes because he didn't properly diagnose her condition," she recollected.

"I consider myself to be an activist. I believe that you can't just sit back and complain about things. You've got to get up and make changes," she said. Fueling her lifelong crusade for the inclusion of women and minorities in health care research has been her own personal commitment to social justice.

She graduated from medical school, and later served as Chair of the Pathology Department at Howard University. While at Howard, she served as president of the National Medical Association, a national organization that represents some 20,000 African-American physicians. Later she led the Office of Research on Women's Health at the National Institutes of Health.

The experience of teaching and managing a department at a predominantly Black institution proved to be a gratifying experience. She said she especially enjoyed mentoring and teaching at Howard, and maintains close contact with her former students.

"I've enjoyed teaching and being a role model to students. It comes easily to me because I know how difficult it can be when there's no one around like yourself to be supportive," she said.

Advice: Turn your anger at medical errors into helping others live.

Read another of our activist stories, or read Ronald Roach’s source story.

Many of the doctors groaned: Patient’s choice of heart treatment options

Cynthia Cooper’s cardiac surgeon recommended surgery to treat her blocked and narrowed heart arteries. But her cardiologist told her to have a stent (a short tube made from a wire mesh) implanted instead.

"It can be extremely frustrating to have these different options thrown at you," said the 72-year-old resident of a Boston suburb. "Why not meet with all the doctors at one time? It would be much easier for the patient."

Three years ago, a surgeon recommended a coronary artery bypass graft (CABG) for her because he believed it was the safest and most reliable option. But Cynthia had already undergone several abdominal surgeries, and was reluctant to have another operation.

So she asked her cardiologist. "I said to him, 'If I was your mother or your sister, what would you tell me to do?'" He advised a stent. She chose an angioplasty, a procedure that inflates a balloon inside the artery to clear the blockage. A stent was implanted to keep it open.

Several weeks later, surgeons and cardiologists discussed her case during Clinical Crossroads, while she sat in the audience, anonymous. The group overwhelmingly decided that her situation warranted surgery. When she told them she had chosen a stent instead, many of the doctors groaned. The Journal of the American Medical Association published the debate over her case in November 2004, and plans a follow-up article.

Cynthia still believes she made the right choice. Her last checkup, three months ago, showed the stent is working perfectly.

Advice to patients considering diverse options: Get a patient advocate to help you decide.

Read another of our stories about a patient’s correct and difficult choice, or read Liz Kowalczyk’s source story in the May 29 issue of the Boston Globe.

Now her mother is feeling well: Misdiagnosed stomach cancer

Kathleen Byrne, the 75-year-old mother of Irish health activist Janette Byrne, was given an incorrect diagnosis of stomach cancer, and told she would need her stomach removed (in a gastrectomy). When Mrs. Byrne's test results were sent to England for a further opinion, cancer was ruled out.

The Byrne family are now calling for a full investigation into the events at the Dublin hospital, but the hospital has said there will not be an inquiry.

The operation was scheduled for November 2006, but cancelled at the last moment. A number of biopsies were taken, the family said in a press release describing the events. Then, in March, the pathology results from an English laboratory showed that she did not have cancer.

Janette Byrne told irishhealth.com that her mother is now receiving medication for diverticulitis, and is feeling well.

Janette Byrne is the founder of the lobby group Patients Together. The group and its website campaign particularly for improvements in Accident & Emergency departments. She is also the author of If It Were Just Cancer, a book describing her own struggle with breast cancer.

To see a 2005 interview with Janette Byrne, visit...
http://www.irishhealth.com/video.html

Advice: Seek a truly independent second opinion when surgery is suggested.

Read another of our misdiagnosis stories, or read IrishHealth.com’s source story.

I get by it with a little help from my friends: Smoking cessation and patient advocates

What’s the most common source of assistance that adult smokers in America use to quit smoking? Nope, it’s not Nicotine patches, prescription pills, nicotine gum, nasal sprays, inhalers, lozenges, books, pamphlets or videos. Rather, smokers most often relied on the support of family members and friends. One quarter of them (26%) named that, in the National Health Interview Survey, according to a graph in yesterday’s USA Today by Melanie Eversley and Adrienne Lewis.

More evidence of the role of patient advocates from one’s family and social circle…

Advice: Have your family and friends help you stop smoking.

Read another of our stories about the role of a friend as a patient advocate.

He gets to live on: NICU parents

Phillip Rock was born to Denise and Charlie Rock in 2001, 15 weeks prematurely. His life lasted only two days.

A year later, Denise conceived again, and again gave birth early. During Leighton Rock’s 35-day stay in the neonatal intensive care unit (NICU), Denise and Charlie met several other parents of preemies, who could give moral support.

Three years later, Denise gave birth to another premature baby girl, Emerson, now a toddler.

The March of Dimes has started a program to formally provide support to parents of preemies. The March of Dimes NICU Family Support Program also includes an online community at ShareYourStory.org where members who have already experienced preterm labor can share information with those who have not.

Now Denise volunteers at the program’s chapter office at St. Luke’s Hospital in Kansas City, Missouri, near home in Shawnee, Kansas. "Losing a child is the worst thing that has happened in my life," she says. "There are not very many parents [who have lost a child] who get to talk about their child all the time. I say Phillip’s name every day. He gets to live on even though he’s not here….After Phillip died, I vowed not to let his birth and death be for nothing. So even if I help just one person, his life had a purpose."

Advice: Vow to carry on your family member’s spirit.

Read another of our stories about a mother patient advocate, or read Leah Ingram’s source story in the June 2007 issue of Continental.com magazine.

I get bottles at a time: Abuse of Adderall for ADHD

"Todd" is a senior at Needham High School, outside of Boston. He has been diagnosed with Attention Deficit Disorder (ADD, or ADHD) by a psychiatrist and regularly takes Adderall to help him focus. His friends have often asked him for a tablet or two before SATs, tests, or just for focusing on homework.

"I get bottles at a time so I can afford to give it out, but I don’t like to. People ask me because they feel really overloaded with work and feel like they need the extra push to keep up. They’ll pay me or even do me favors to get it. I could name at least ten people who took Adderall to get better scores and they got it easily from friends."

Another senior commented, "I have a friend who gets prescribed Adderall and doesn’t even take it; he only sells it. He sells each pill for five or ten bucks."

About 5% of the American population has ADD, according to the ADD Association, and Adderall is widely used. It may well be abused in many other neighborhoods with highly competitive high schools.

Advice: We need to come back down to Earth and be more understanding of human flaws, say Becca Pryor and Sarah Kristeller, and create a healthier competition among our kids.

Read another of our ADHD stories, or read the source story by Becca Pryor and Sarah Kristeller in the May/June issue of The Hilltopper.

Her leg has healed but his conscience hasn’t: Misdiagnosed broken foot

Here’s a father’s story:

Fatherhood also comes with tears and feelings of emptiness or stupidity. I almost rushed Lucille to the hospital for her uncontrollable cry … a cry that ended when my wife came home and gave her food instead of the bottle of water I had been supplying.



Nothing comes close to the time when Caroline’s broken foot was misdiagnosed as a sprained ankle. The doctor advised me to help her try walking with the leg.

 A week or so later, the leg was swollen and had excruciating pain. I sought for a second opinion. The leg had been broken. Caroline cried, and I cried.

 Her leg has healed sufficiently, for which I am eternally grateful.

I wish I could say the same thing for the hurt I have suffered for helping her walk on a broken leg.


Advice: Only hindsight is 20-20. If you make a mistake, remember that you can only prevent what you can predict. Forgive yourself.

Read a father patient advocate story, or read the Argus Observer’s
source story.

Father’s Day [pain medication]

Happy Father’s Day!

My father passed away three months ago after a long and full life, ending with a very long, uncomplaining fight against Parkinson’s Disease.

He was lucky enough to rarely suffer from pain. Once, years ago, he had developed a kidney stone. The pain is said to be as acute as the pain of childbirth. He lay awake in pain before telling my mother, and then dodged her question about how he was feeling. The stone eventually passed. I doubt he took any pain medicine.

The stoic acceptance of pain may be admirable. Or it may be misguided, as pain itself can be harmful. Pain can release hormones that stress the heart and lungs. Pain can cause blood pressure to spike, leading to heart attacks and strokes.

Now, of course, a variety of pain meds are now available, and often, their benefits outweigh their risks. Be sure to consider the trade-offs: every year, 5,000 – 6,000 Americans die from gastrointestinal bleeding from drugs like ibuprofen or aspirin, according to an article in the American Journal of Gastroenterology.

Advice to those in chronic pain: consult your doctor if the pain limits your activities, and discuss the trade-offs.

Read one of our pain management stories, or read Tina Rosenberg’s nuanced story about pain, addiction to opioids, and the role of doctors and patients in treating pain, in today’s New York Times Magazine.

They can receive the proper treatment: Lewy Body diagnosis

The Guest of Honour at the fund-raiser was octogenarian actress Miss June Brown, also known as Dot on the popular BBC 1 television soap, EastEnders. She said, "Alzheimer's is not the only dementia," as her late husband, the actor Bob Arnold, died of Lewy Body Disease in 2003. "It is important for people, especially doctors, to know about Lewy Body Disease so that fewer people are misdiagnosed and so they can receive the proper treatment."

Lewy Body disease, also known as Dementia with Lewy bodies (DLB),
Is Europe’s second most common form of age-related dementia. Between 120,000 - 130,000 people in the United Kingdom are thought to suffer from this terrible neurodegenerative disease.

Lewy bodies, first identified by Dr. Friedrich Lewy in 1912, are microscopic protein deposits found in the brain. Their presence disrupts the brain's normal functioning, causing progressive mental and motor dysfunction.

Because DLB shares common characteristics with both Alzheimer's and Parkinson's Diseases, it is often misdiagnosed. Accurate and early diagnosis is crucial because administering the wrong drugs can have extremely adverse and even fatal consequences.

The Lewy Body Society's President and Chairman of its Medical and Scientific Advisory Panel is Professor Ian McKeith of Newcastle University, who is acknowledged as the world's leading expert in DLB , having published more than 200 peer-reviewed papers on the subject.

"Virtually unrecognised 20 years ago, DLB could within this decade be one of the most treatable neurodegenerative disorders of late life," said Prof McKeith. "The first goal must be to raise awareness."

Advice for those with a family member with dementia: Consider whether Lewy Body disease could be a diagnosis.

Read another of our neurology diagnosis stories, or read the source story in Medical News today.

They need lots more than six cigars: Multiple births from fertility treatment

Less than a day apart, women from Arizona and Minnesota gave birth to a total of 12 babies. Two sets of sextuplets were born, one on Sunday in Minnesota to Ryan and Brianna Morrison and the other one on Monday in Phoenix to Bryan and Jenny Masche. The Masche babies were born at 30 weeks. The Morrison children were born at only 22 weeks.

One of the Morrison sextuplets died Thursday. His siblings' chances of survival are low. The future health of all of these babies is a big question mark.

"We'll be lucky, really lucky," said local fertility specialist Dr. Scot Hutchison, "if several of these children don't have to have long-term special care. The risk of cerebral palsy and learning disability is four times more likely for twins than for single babies. For triplets, it's eight times more likely. And so it's really an exponential thing when you get out to six babies."

And that's after the millions of dollars in intensive care unit charges the dozen premature babies are likely to run up, said Dr. Hutchison, director of the division of reproductive endocrinology and infertility at the University of Arizona.

Pregnancies such as these are dangerous for everyone, including the mother. Jenny Masche could have died Monday: several hours after the Caesarean delivery, she suffered acute heart failure because of the extra blood in her body.

The Masche family has health insurance to cover most of the cost, but expenses like this drive up premiums for everyone. The Masches have set up a Web site on which they are soliciting donations ranging from diapers to a vehicle large enough for two adults and six babies with car seats. A church sponsored a diaper drive and collected 22,000 diapers for them. It probably won't be enough. "This couple will exhaust all of their resources, and after a few months, when no one thinks it's interesting or cute anymore, they'll be left trying to struggle through," Dr. Hutchison said.

The number of American babies born in higher order births - triplets or more - more than quadrupled from 1971 to 1995, mostly because of fertility treatments, according to a National Center for Health Statistics report.

Fertility treatment is not an exact science. But there are things responsible practitioners can do to reduce the chance of multiple births, from limiting the number of embryos implanted in an in vitro procedure to the choice of fertility drug regimen to halting a cycle.

Dr. Hutchison said he considers twins an acceptable complication and triplets a failure. Years ago, his practice produced one set of quadruplets, which made him re-examine how aggressive he wanted to be with treatment.

Our best wishes for the Masches and the Morrisons.

Advice to women seeking fertility treatment: Ask not only about a clinic's success at births - not pregnancies- and also about what it can do to reduce their chance of having multiples. "The goal has to be healthy baby, healthy mother, and it should be one baby at a time," says Dr. Hutchinson.

Read another of our stories of too much of a good thing, or read Anne Denogean’s source story.

A tool for patients and advocates: Hospital error rates

A new publicly available resource shows individual hospitals’ quality ratings, so you can identify the best hospital near you. The U.S. Centers for Medicare and Medicaid Services gathers the information from hospitals across the country and posts it here. The database shows graphs on the treatment of patients with heart conditions and pneumonia, and those undergoing surgery.

Advice: When it’s not raining the roof doesn’t leak, and when it’s raining, it’s too late to go and fix the roof. That’s especially true for personal health issues. That’s why you should take a few minutes now, and pick out the best hospital nearby. That way, in an emergency, you’ll know where to go.

Public Policy Minute: Hopefully, the public availability of quality measures will stimulate hospital leaders to compete on quality. Paul Levy, the head of Beth Israel Deaconess Medical Center in Boston, hopes so, and has posted many measures on a new BIDMC web site. Beth Israel shows up among the top hospitals on all but three of the 21 measures that can be viewed on the CMS database, among its 12 neighboring hospitals. Bravo, Paul!


Not all quality contests are as fair and accurate as CMS’. Read a story of a medical error by a physician who won an award that was not carefully made, or read Paul Levy’s blog post on the public posting of BIDMC’s quality measures.

Something women themselves can do: Avoiding ovarian cancer misdiagnosis

The mother of a friend died years ago from ovarian cancer, so the good news to be formally announced on June 25 about its early detection hits close to home.

Dr. Barbara Goff and her colleagues found that one-third of women with ovarian cancer had initially received a misdiagnosis, e.g., of depression, menopause, irritable bowel syndrome, or "growing old." She said, "12% were told there was nothing wrong with them, and it was all in their heads."

“There are so many horror stories of doctors who have told women to ignore these symptoms or have even belittled them on top of that,” said a co-author, Dr. Debbie Saslow.

Ovarian cancer can grow and spread quickly, so even a few months’ head start in getting the diagnosis can be vital.

"This is something that women themselves can do," said Dr. Carol Brown of Memorial Sloan Kettering Cancer Center, "and we can familiarize clinicians with, to help make the diagnosis earlier."

Advice to women: If over the last 2 - 3 weeks you have experienced near-daily bloating, pelvic or abdominal pain, difficulty eating or feeling full quickly and feeling a frequent or urgent need to urinate, see a gynecologist, especially if this is new and different from your normal state of health.

Please help us spread the upcoming announcement by the Gynecological Cancer Foundation, the Society of Gynecologic Oncologists, and the American Cancer Society, by forwarding this to your friends.

Read another of our delayed diagnosis stories, or read Denise Grady’s source story in today’s New York Times.

Drink some water and drive on, soldier: A veteran’s misdiagnosis

A Utah man is striving to live a full and rewarding life in the U.S. military after he was misdiagnosed with a condition that eventually led to the removal of part of his intestine.



Staff Sgt. Mark Taylor started experiencing abdominal pain that he did not receive on the battlefield.
 
He decided to get a colonoscopy to see if that would diagnose his problem, and had it done at a military hospital. The military doctor’s diagnosis: irritable bowel syndrome.

 "'Drink some water and drive on, soldier...'--that was their attitude about it," he says.



He followed his doctor’s orders and deployed to Germany and Kosovo. As a member of the reserves, Mark later discovered that his pain was getting worse. It turns out that he did not have irritable bowel syndrome. He had a more serious condition: ulcerative colitis. "
“By the time that I found out exactly what it was, my illness had progressed so far that it was pretty much incurable at that time," he said.
 
Having gone so long untreated, his condition had progressed to the point that surgeons had no other choice but to remove his entire colon. This sudden and dangerous turn put Mark in a fight for his life.

 As if ulcerative colitis wasn’t bad enough, doctors also diagnosed him with bacterial meningitis.

 "When you have a doctor tell you they don’t think they’re going to live…that’s really scary," said his wife, Jennifer. 

She knew that her husband was no quitter and that he would fight to survive.



Mark recovered and eventually decided to re-enter the military. 
"I really wanted to go back and take care of soldiers," he said.



Unearned suffering can be redemptive, as Dr. Martin Luther King, Jr. said. It is for Mark.

Advice to victims of medical error: Teach and help others after you learn from your suffering.

Read another of our veterans’ stories, or read the source story by Nicole Hunter and Doug Ware.

Keep it inside the locker room: FDA drug safety reviews

Congressional investigators and the New York Times have identified at least five reviewers at the Food and Drug Administration (FDA) who have recently been disciplined for uncovering evidence about the dangers of certain popular drugs. They include: Dr. Rosemary Johann-Liang, for her investigation of the diabetes drug Avandia; Dr. Andrew Mosholder over anti-depressants; Dr. David Ross over the antibiotic Ketek; and Dr. Victoria Hampshire over her review of heartworm medicines with fatal effects on more than 500 dogs.

Dr. Hampshire describes a "feeling of fear" among reviewers at the FDA. The FDA Commissioner, Andrew C. von Eschenbach, has urged the safety officials to keep disagreements "inside the locker room," and said those who discussed findings with outsiders would be "traded from the team." Indeed, Dr. Hampshire’s work in uncovering the dangers of heartworm medicine led to her being disciplined and being made the subject of a criminal investigation.

Secrecy by the FDA blocks patients from empowering themselves. And if the FDA does not adequately guard us from dangerous drugs, we have to be more vigilant.

Advice: If you’re prescribed Ketek or Avandia, ask your doctor about adverse reactions. Ask your vet about adverse drug reactions from your dog’s heartworm medicine.

Read another of our Avandia stories, or read Gardiner Harris’ source story in today’s New York Times, "Potentially Incompatible Goals at FDA."

Thank God she did: Night shift in the hospital’s intensive care unit

Melinda Henneberger tells the story of her recovery from breast cancer surgery:

My husband wanted to come with me, but I finally persuaded him to stay home, thinking how much scarier it would be for our two kids if we were both gone. But my best friend, Mary, did fly in from Oregon and thank God she did. I was on the table for 12 hours and when I came out, they put me on a morphine drip. Nauseated, I’d start to vomit, then choke. I was thirstier than I’d ever been, but I couldn’t drink anything. Mary was there to feed me ice chips and hold me up when I choked. A few times, we pushed the button for help, but no one responded for quite a while Sometimes they never came at all. If I’d been on my own and choking, I’m not sure how I would have made it through the night.

The night shift staffers were kind and caring, but appeared to be overwhelmed by patients needing attention. I could hear other patients crying out for help that didn’t seem to come. It was horrible listening to them.

Later in the week, when I was able to move around, I fed ice chips to another patient. I stayed up all night with them. It took me half an hour just to get across the room. I was still in a great deal of pain and moving pretty slowly.

The whole thing was Dante-esque.

A spokesperson for the medical center says the hospital assigns one nurse for at least every two patients in the ICU, both night and day.

Melinda’s advice to people having inpatient surgery: By all means, get somebody to stay with you through the night.

Read another of our night stories, or read Max Alexander’s source story in the June 2007 Readers Digest.

Prime time for medical error: The doctor’s daughter in the night shift

Seven-year-old Jacquelyn Ley was in the hospital for surgery for her shattered elbow. After surgery, night nurses gave her morphine via a pump, inadvertently setting the dose much too high. Luckily, her mother was there, spending the night in her daughter’s room. She noticed that Jacquelyn was barely breathing, and could have died.

Jacquelyn was lucky because her mother was there and because she knew her stuff: Dr. Carol Ley is Chairman of the Board of the University of Minnesota Medical Center and director of occupational medicine at 3M Company. Dr. Ley says, "the night shift, with its hand-offs and staffing issues, is prime time for medical error."

Advice: Get a patient advocate to be with you in the hospital.

Read another of our night-time stories, or read Max Alexander’s source story in the June 2007 Readers Digest.

The pharmacist-daughter’s mantra: Drug side effects in the elderly

Phylliss Hunt Moret’s story:

Being my parents’ primary caregiver had never crossed my mind until a critical event six years ago when my dad fell and broke his hip a week prior to my mom’s shoulder surgery. Diabetes, high blood pressure, and heart disease evolved to heart attacks, strokes, an amputation, cognitive decline, and 12+ daily medications each.

Our country "gets it" that babies and toddlers can’t take the same drugs as adults. But seniors have their own unique medication-related challenges. As a pharmacist committed to seniors’ care, I know the mantra by heart: All symptoms in a senior should be considered a drug side-effect until proven otherwise.

A common scenario: A senior gets a new prescription to treat something, say depression. Then a new symptom presents itself: confusion. The senior gets another prescription to treat the confusion, when all along the confusion was a side effect of the medicine used to treat the depression.

Why does this happen? Because seniors are at greater risk for medication-related problems due to multiple illnesses, multiple physicians, multiple medications, and multiple pharmacies.

Because studies repeatedly show that one in five seniors takes at least one medication considered potentially inappropriate, when instead there are alternatives with less risky side effects for seniors.

And because medication-related problems all too often look like common geriatric problems an d syndromes, e.g., confusion, depression, insomnia, tremors, incontinence, weakness, loss of appetite, fainting, loss of balance, falls, and more.

Because there is a scarcity of expertise among health care professionals about geriatric pharmacotherapy and the unique medication-related needs of seniors. Which means that too few health professionals know the mantra….

Advice to people with elderly parents or spouses: Remember Phyliss’ mantra: All symptoms in a senior should be considered a drug side effect until proven otherwise.

Read another of our drug-drug interaction stories, or learn more about medications that are potentially inappropriate for your parents.

He should not be allowed to harm anyone else: Drug study and schizophrenia

Susan Endersbe battled depression her whole life. When her illness worsened, she would check into a hospital. When she did so at age 40 in May 1994, doctors at the Minnesota hospital gave her an anti-depressant, and three weeks later she said she was ready to leave soon.

The next day she was referred to a doctor who enrolled her in a drug study he was paid to conduct, though her suicidal tendencies should have excluded her. He stopped giving her the anti-depressant, and then she had to wait two weeks before getting an experimental drug or placebo.

During those two weeks, the doctor recorded her adverse effects as "0," though nurses documented a steady decline. Susan expressed reservations about being part of a drug study, telling a hospital worker, "I guess I didn’t understand that I would be going off all my other medications."

She spoke repeatedly of killing herself. But on June 10 the doctor wrote that she was "medically improving," and cleared her to visit her apartment alone, though leaving the hospital violated the study’s rules and she had mentioned suicide the night before.

She walked home, and committed suicide the next day.

Her brother learned that the doctor has since been receiving money from drug companies, overseeing clinical trials. Stunned to hear this, he said, "He should not be allowed to harm anyone else."

Indeed, this doctor, and many others in Minnesota, had received money to conduct drug studies even after formal disciplinary efforts by the state board of medicine.

Advice: In considering your participation in a drug study, find out whether you can keep taking your other medicines.

Read another story on this topic, or read the source story in Sunday’s New York Times.

He was a forward observer: An Agent Orange victim and plaintiff

Stephen Zardis was born in Malden, Massachusetts, and attended Boston College for two years. Then he enlisted in the U.S. Army, and served in 1968-69 as a forward observer near Cambodia in an area saturated with Agent Orange, the chemical used to destroy the jungle plants that concealed the Viet Cong.

Several years after his honorable discharge, he was diagnosed with atypical multiple sclerosis. Other Vietnam vets told him of their strange and rare health problems. His research convinced him Agent Orange was to blame. He became the director of the Massachusetts chapter of Agent Orange Victims International, spreading the word about the origin of the veterans’ health problems, and helping ailing veterans find answers and restitution. He became the lead plaintiff in the class action lawsuit filed in Federal District Court in Boston in 1979. The class won a settlement in 1984.

His health continued to deteriorate, and he passed away on Thursday, at age 59.

"I've learned through my own medical history that I can’t take it with me. So I wanted to do something with it, something that would have a meaning and a purpose," he said in 2003, explaining why he had donated $1 million to his alma mater, Cathedral High School in Boston’s South End.

Advice to victims: Find other members of your class, and learn and advocate with them.

Read another of our patient advocate activist stories, or read Tom Long’s obituary on Stephen in Tuesday’s Boston Globe.

A long and rocky course of recovery: Gastric bypass surgical error lawsuit

Mary Larson was very overweight, and had gastric bypass surgery to reduce her appetite. The surgery itself went well.

But after the operation, the connection linkng the small intestine to the pouch created to limit food intake (the anastomosis) began to leak.

Eight days after the surgery, she was in critical condition. The same surgeon performed emergency surgery, and irrigated and cleaned the area, but did not repair the leak. The surgeon then transferred her to a long-term care facility without a plan to follow her or have another surgeon follow up on her progress. Later transferred to another hospital, she underwent several more operations and endured a long and rocky course of recovery.

She filed a lawsuit, saying the surgeon failed to diagnose and treat the leak and the resulting peritonitis, despite her "constellation of symptoms." They asked the judge to add the medical center as a defendant, saying it had granted privileges to the surgeon though he lacked appropriate training and board certification, and had a history of malpractice claims and restrictions on his practice. The question of whether the medical center was negligent in credentialing the surgeon has reached the Minnesota Supreme Court. Meanwhile, Mary has been recovering.

Advice: Check out the experience and qualifications of your doctor.

Read another of our gastric bypass stories, or read Wayne Guglielmo’s source story in the May 4 issue of Medical Economics.

Like father, unlike son: Athletes and undiagnosed heart conditions

Boston Celtics star Reggie Lewis. Loyola Marymount basketball star Hank Gathers. Damien Nash of the Denver Broncos. Olympic gold-medal skater Sergei Grinkov. Atlanta Hawks center Jason Collier.

All these top athletes died from heart failure while young and in their prime.

Tim Cox didn’t want that to happen to his son, Tim Cox, Jr., a top high school basketball and football player. The athlete’s grandfather had a thickening of the heart muscle (HCM, hypertrophic cardiomyopathy) and had died at 63, and Tim, Senior had had an electrocardiogram (EKG) showing the same condition. The athlete’s parents prevailed on the young sports star to have an EKG, and it came back positive.

They and the cardiologist had to have a series of tough conversations with their son, who lives to play sports. Tim, Jr. no longer plays competitively. He’ll never help his basketball team get to the state tournament. His parents even wonder if they did the right thing. But what if they hadn’t had him tested and his heart had failed? "How could we have lived with ourselves?!" asked his mother.

Advice to athletes: Ask your doctor to give you a physical exam with the inexpensive 12-point screening recommended by the American Heart Association, which has eight questions and four simple tests.

Read another of our athlete stories, or read Gretchen Reynolds’ source story in the New York Times of June 3.

It was all about money: Drug company incentive payments

David Olson was suicidal, in a hospital. His psychiatrist tried repeatedly to recruit him into clinical trials of a new drug. Indeed, drug companies paid his doctor thousands of dollars for each patient the doctor recruited. But David refused to be a test subject. His doctor discharged him from the hospital. David committed suicide two weeks later.

The state medical board found the doctor had “failed to appreciate the risks of taking Patient 46 off Clozaril, failed to respond appropriately to the patient’s rapid deterioration and virtually ignored the patient’s suicidality.”

David sister, Susie Olson, said the doctor “had no time for my brother unless David agreed to get into a drug study. He said, ‘You’re wasting my time and the hospital’s.’ It was all about money.”

This doctor was not a marginalized “bad apple.” He was the president of the Minnesota Psychiatric Society. Many other disciplined doctors also received thousands of dollars from drug companies. An analysis reported by Gardiner Harris and Janet Roberts in today’s New York Times found the drug makers gave a total of $1.7 million to 103 Minnesota doctors who had been formally disciplined by the state medical board, over the period from 1997 to 2005.

Advice: Before choosing a new doctor, ask the office manager if the doctor accepts money from drug companies.

Read another of our Minnesota stories on this topic.

Speaking is difficult, but it brought national honors: Dystonia patient advocate

Speaking is difficult for nurse Linda Cannon-Mott and other individuals with dystonia, a common movement disorder. But it is speaking out that has brought the Dystonia Support Group of Alabama national honors.

The National Spasmodic Dysphonia Association has named Linda the Midge Kovac award recipient for raising awareness about the disability.

"When you have it (dystonia) you have a lot of emotion; you’re whole quality of life changes,” she said. “When you talk like this and your head shakes, people stare. I wasn’t comfortable going to church or the grocery store."

Linda, a resident of Alabaster, Alabama, was misdiagnosed for 16 years. The entire time she was told she had benign essential tremor and took 12-15 medications. None of those medications helped her and eventually she knew why. She had a voice disorder ("spasmodic dysphonia").

This is why she believes it is so important for the Alabama group to exist.

"We want to prevent other people from being misdiagnosed, let people with the disorder know there is a support group and help other people understand the disease,”"Linda said.

The Dystonia Support Group of Alabama is also being honored by the Dystonia Medical Research Foundation as "Support Group of the Year." The group was recognized for its awareness and fundraising campaigns, including the distribution of thousands of bookmarks with Dystonia information as well as raising $30,000.

More than 300,000 people are affected by the disorder. There is no cure, but it can be treated with multiple shots of Botox. The same chemical that many use for cosmetic reasons helps paralyze muscles and decreases the number of spasms in the body’s extremities.

Advice: Forward this to friends with movement disorders.

Read another story of an activist with a movement disorder, or read Samantha Hall’s source story.

You’ve got to get them home too: An activist patient advocate for children

In 1978, Julia Mikol was born, with severe combined immunodeficiency, which required her to live in a bubble—a completely sterile environment. When she was three months old she had a bone marrow transplant, which gave her a functioning immune system, but left her unable to breathe on her own. She spent the next two years in the Intensive Care Unit at Memorial Sloan-Kettering Hospital in New York City.

Her mother Margaret moved into the hospital to be with her. Because of the huge hospital bills - $350,000 a year – the Mikols exhausted their medical insurance and had to rely on Medicaid. Though Medicaid would pay the huge hospital bills, its rules initially forbade reimbursing the Mikols for caring for Julia at home much less expensively, at about $50,000 a year.

But after a long bureaucratic struggle, the Mikols became the first parents in New York, and only the second family in the nation, to benefit from the rules of a new federal program that allows Medicaid payment for home care for a child like Julia on life support. "The process transformed my personality," said Margaret. "I had been shy and timid, and I became brassy and obnoxious. I changed into a beast to protect my child."

Julia’s condition worsened as she got older. At age eight, she refused a recommended heart and lung transplant, and her parents reluctantly agreed. Before she died, Julia asked her mother to promise to help other children: "You got me home. You’ve got to get them home too."

Sick Kids Need Involved People is the fulfillment of that promise. The organization, with a shoestring budget, has helped 7,000 families deal with their children’s life support, cancer, HIV/AIDS, sickle cell anemia, muscular dystrophy, cerebral palsy, autism, and other conditions. Margaret and her staff help parents navigate the hospital, insurance and Medicaid systems, and assist with school and housing issues, and advise parents on dealing with the sick child’s healthy siblings.

Margaret hopes one day to build a clinically staffed residential community.

Advice: Forward this to your friends with hospitalized children.

Read another of our hero stories, or read Caroline Kennedy’s source story in the June 4 issue of Time magazine.