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Wednesday, December 31, 2014

The war on cancer: A public health triumph

In the war on cancer, the American Cancer Society announced in a yearly report by Stacy Simon that over the last 20 years, 22% fewer people have died from cancer, representing 1.5 million avoided deaths.  The biggest single reduction occurred in lung cancer, according to the Society’s Vice President for Surveillance and Health Services Research, Ahmedin Jemal.  There are fewer smokers, as millions quit, and millions of others never started smoking.

This was not primarily the result of medical care, though doctors certainly advised many of their patients to quit.  Rather, quitters used a variety of methods over multiple attempts to quit, including advice from doctors and others, smoking cessation products like patches, gums, etc., reading generic or individualized materials, quitting cold turkey, etc.  So this wasn’t “patient engagement” by the medical system per se, as quitters were not primarily benefiting from their doctors’ active medical management of their smoking.  They weren’t patients; for most quitters, cancer had not developed to the point where they required treatment for cancer.  Rather, in most cases the successful quits came from multiple self-initiated efforts by the “worried well,” often with nudging by family members.

There is much credit to share for all the lives saved, e.g., for doctors who advised patients to quit.  Yet this victory seems due more to public health efforts than to the medical system. 

Efforts to meliorate the toxic effects of other lifestyle choices about alcohol, drugs, overeating, inactivity, etc., might also benefit from focusing on public health efforts addressed to the worried well, in similar ways. 

Advice:  Have a happy New Year!   Give a hug to your public health friends, and let’s celebrate!   

Tuesday, December 30, 2014

Skype psychotherapy and pets: It brings us closer

Joseph Burgo’s story:
I’ve been a clinical psychologist for over 30 years. Trained in the psychoanalytic method, I spent most of my career in an office seated behind clients who lay on a couch. Then, three years ago, after several followers of my blog asked if I would be willing to work with them by Skype, I started practicing face-to-face video psychotherapy with clients all over the world. Usually I “meet” them in their homes.
Often, I meet their pets as well.
Noelle, a 42-year-old woman living in the Australian outback, reached out to me for help coping with a midlife crisis. She had recently learned she would never be able to bear children and was in profound grief. She usually spoke with me from her bedroom, where she would sit cross-legged on the bed. Often I heard her dogs, three Shelties, barking in the background. One day when they seemed especially obstreperous, she gathered them onto the bed with her. I will never forget the agonized expression on her face as she told me, “These are my children.”
As she wept, she held one of them close and buried her face in his fur. My chest ached and tears came to my eyes. Rather than the existential loneliness of weeping on a couch, staring up at a blank ceiling, hers was a grief shared with her animals. Although across the world and thousands of miles away from her, I shared it, too. We were together, all five of us, in the pain.
After all my years in practice, I’ve come to understand that the greatest influence on the healing process in psychotherapy, at least the way I practice it, is the love I feel for my clients and the love they come to feel for me. As a professional, I’m uneasy speaking this truth aloud, and my clients often don’t feel entirely comfortable with it either. The love we feel for our pets helps ease the way. I witness the affection they feel for their pets, they see mine for Alice, and it brings us closer.
Although Sigmund Freud’s psychoanalytic method encourages the analyst to present a blank screen, concealing all details of his personal life, thoughts and feelings, Freud himself practiced from his home and included Jo-Fi, his favorite Chow Chow, in many of his sessions. Freud supposedly relied on his pet’s reaction to a client for help in assessing the person’s character. He also felt that a dog’s presence helped to calm his clients.
I’m sure that if my teachers and supervisors from analytic training were to hear about the work I now do and my views on the healing power of love, they would shake their heads in disapproval, concerned that I had gone to the dogs.
Read another post about the therapeutic power of love. 
Thanks to Joseph Burgo, whose New York Times article and Opinionator blog post are excerpted here.  He is the author of the forthcoming book The Narcissist You Know: Defending Yourself Against Extreme Narcissists in an All-About-Me World.

Monday, December 29, 2014

Medical decision-making among treatment options: The signature medical mistake of my life

     Dr. Jerome Groopman and Dr. Pamela Hartzband wrote a clear and insightful book, Your Medical Mind:  How to decide what is right for you.  They illustrate decision-making through stories about themselves and their patients.

     Dr. Groopman’s father died from poor care for a heart attack, back in the days when some doctors thought that removing the heart attack patient’s blood would unburden the failing heart.  As a reaction, Dr. Groopman became a “maximalist,” believing that modern medical interventions were generally good things.  Following that belief, when suffering from persistent excruciating back pain, he opted for aggressive surgery—spinal fusion--when merely waiting might have been preferable.  The surgery gave him lasting pain and debility; he called it “the signature medical mistake of my life,” with disastrous consequences.  It also gave him a long-term belief in making more nuanced decisions about treatments for himself and his patients. 

     Years later, his doctor advised him to take a statin to reduce his high cholesterol.  In light of the heart disease in his family, he knew he had to do something.  However, Dr. Groopman knew of a friend who had incurred lasting muscle pain, a common side effect of statins.  So he negotiated with his doctor to take a smaller dose of statins, and found that the smaller dose was great enough to lower his cholesterol, and yet small enough to avoid any muscle pain.  

Advice to patients:  Learn from the experiences you and your friends have had and your family history.  Consider them and your biases when making decisions about your medical treatment.  

Wednesday, November 19, 2014

A young AIDS patient: What love is

Dr. Betsy MacGregor’s story:

     We admitted a great number of children who were sick with AIDS to my hospital back in those days, and sadly we lost many of them.  I remember one two-year-old boy in particular.  He touched me deeply.  As was typical, he had acquired the virus from his infected mother when he was born, and despite our best efforts to help him, he was slowly slipping away from us.  He lay quietly in his crib, hollow-eyed and emaciated, never smiling or even crying.  He simply did not have the energy.

     The little boy’s mother had brought him to our emergency room one night, burning up with fever.  The chest x-ray we took showed he had pneumonia, and so we promptly admitted him to the pediatric ward.  His mother lingered at his side for a time, but then departed and never returned.  Eventually we learned she had been admitted to another hospital shortly after leaving ours and had died there from complications of her own AIDS.  The one thing she had left her son was his name. She had called him Angel.

     Angel had been on our pediatric ward for three months.  There was no other place that wanted him, and frankly we were happy to keep him with us.  At least we knew he would be fed and kept clean and sheltered and would occasionally be held in another human being’s arms when one of the staff was able to spare a moment or two.  We knew he had little time left.

     One night, when I was on call and kept busy on the ward into the wee hours of the night, I glimpsed a side of Angel’s story I had not been aware of before.  The lights had all been turned down and most of the children put to sleep in their beds, and I was going about my intern’s work – reviewing orders, checking on patients’ vital signs, and peeking in on the sickest ones – when something caught my ear.  A faint lyrical sound was whispering down one of the dimly lit hallways.  Listening closely I detected the thin notes of a melody carried by a human voice. 

     I was tired and still had chores to do, but the wistful sound called to me, and so I followed it, curious to learn what its source was.  It led me to Angel’s room.  Yet what I saw through the doorway as I approached made me pause and remain in the quiet shadows of the hallway rather than enter.  For it was clear that more was taking place in Angel’s room than the sad wasting of an unfulfilled life.  Something more intimate was happening, something that needed not to be disturbed.

     With Angel was his father.  I had never seen the man before, but during discussions on our daily morning rounds, I had heard that he often came in the wee hours of the night to visit his son.  He was a tough-looking person, unshaven and stamped with the harsh signs of inner city life and his own battle with the AIDS he had acquired during years of drug addiction.  I wondered what factors in his life prevented him from visiting in the light of day as other parents did.  Perhaps he was fully occupied with trying to survive, I thought, or maybe he just preferred the lonely hours of the night, when he was less likely to encounter the accusing stares of strangers’ eyes.

     The man was sitting in a chair, holding Angel on his lap and feeding him infant formula with a dropper.  As I watched, he waited carefully for his son’s lips to accept each drop before offering him another, all the while gazing into his child’s eyes and softly crooning a melody – a hauntingly soothing sound, the notes filled with reassurance and encouragement.  Angel’s eyes remained fastened in turn on his father’s face, as if he were drinking in life-giving nourishment from the look that he saw there.

     The two of them were in such a rapt communion that I remained bound in unmoving silence outside their door.  It seemed that I had been summoned not to enter, but to stand as an observer of this exquisite scene, witness to an act of meaning that lay beyond my mind’s measuring.

     What I had been called to witness, my heart said, was the love that was shining brightly in that little room.  Nothing more than that, and nothing less.  In the light of that love, the tragedy of Angel’s pitiful life – of both their lives – was being lifted up and set aside.  I could feel the truth of that as surely as anything my medical books had ever taught me. 

     The shadows in the hallway seemed to whisper, Do you see?  This is what love is.  It is a force more powerful than even life-destroying disease.  It can tenderly embrace whatever the world has abandoned as hopeless and transform it into something to be cherished.

Read a story about the power of love from a group.  Thanks to Dr. Betsy MacGregor for permission to reprint this excerpt from her book, In Awe of Being Human: A doctor’s stories from the edge of life and death

Tuesday, November 4, 2014

Weight Loss in a Group: The team was my family

Stacie’s story:
Two years ago I decided I was tired of how much I weighed and how I felt.  I’m a former athlete, so I’ve worked with coaches and trainers, but I was missing something.

In an Internet search, I found seven nutritionists in my area, and I settled on Kerri Hawkins because of this wellness group.  It was spring, and the group started in the fall, not summer, because people would miss a lot then, and you have to be committed to it.  I started meeting with Kerri individually.  And then I began with the Wellness Group in September 2013.

There’s one caution about the Wellness Group:  you have to be comfortable talking in a group.  Group settings have always been very positive for me.  My team was my family in high school and college.  Having that support around you when you have setbacks, that’s what I got when I came here. 

They set up an e-list for us.  We met 15 times over 20 weeks, once a week for ten weeks, then every other week.  At each meeting we received a new challenge.  Keri and Dr. Altman encouraged us to talk via email about the challenges.  For example, one challenge was, “No added sugar or artificial sweeteners.”  You’re suddenly looking at all the ingredients.  I had to give up diet soda, which, it turns out, is worse for you than sugar.  For women especially, artificial sweeteners are linked to the risk of stroke, and it triggers cravings in the brain for more sweets later.  I still have popcorn with butter and soda with my husband whenever we go to the movies.  We now share a regular soda. 

The “no added sugar” challenge was really hard for everyone in my group.  We received emails that informed us about people’s success.  These really kept me going; otherwise, it would’ve been easy to get lost in thinking, “I wish I had ___,” etc.

The e-list also let me do one of the things I like most:  to cheer for people.  I made a point to respond to every email that came through, which was helpful for me.  I loved celebrating my group’s successes.

And that’s where the team component comes in.  One woman in the group realized it wasn’t the right setting for her, since she did not feel comfortable sharing like the rest of us.  You have to talk about things that are hard, e.g., being a national level swimmer, with a controlled diet.  When I was no longer a competitive swimmer, my unhealthy relationship with food came out and I put on weight in my 20s and 30s.  I had the support of my group, their encouragement and sometimes a hug (when needed).

This program helped me to develop a healthier relationship to food.  It’s not like a 12-step program with alcohol.  You have to have food every day, so I had to establish a healthy relationship with my food.  I’ve even shared this healthy relationship with my dog Jordy.  He loves sharing a bowl of raspberries or splitting a banana.  I lost 48 pounds in 20 weeks.  I made enduring friends and have the lasting support of a team.

Thanks to Stacie for sharing her story, and Kerri Hawkins and Dr. Wayne Altman for connecting us.

Tuesday, October 28, 2014

Weight Loss Groups: Those who post lose the most!

Howard’s story:
     I retired in 2010 at age 69.  Wayne [Altman, MD, my PCP] said, Howard, you should join these groups that Kerri and I have been running.  I was pre-diabetic, on the threshold of being obese.  I had issues with my blood pressure, glycemic index, cholesterol, and all that stuff.  I was skeptical but I was willing to give it a try, because I’ve dealt with weight issues for all my life, and nothing I’d tried before ever worked (or worked for very long). 

     The secret sauce?  You’re in a group, where we all come from different facets of life.  The thing we have in common is the need to deal with health and fitness.  It doesn’t make a difference if you’re a high-powered executive, or retired, or you work like Stacie.  Over 20 weeks, you bond, and you develop a community, and affection.  These e-lists are set up for each group, and remain even after the group is over.

     I was in Group 4, which began in September 2010.  We had buddies; Gerri was mine.  I was sending emails.  But then I thought: Does she really want to hear this?!  She’s much younger.  I’ll send her an email, and I’ll ask her, Is it too much? I won’t be offended.  Her answer was, Oh, absolutely not!  I love it.  It’s a reminder for her of what SHE had made as a commitment to do in her own life.  It’s support and accountability at the same time. The next week, she shared this, and she suggested Wayne should appoint a nudge to remind the group to do emails.  So I did, sharing a daily email about me and responding to others.  The traffic on the e-list just took off!

     So now we say, Those who post lose the most!  You have to be willing to share your difficulties as well as the successes.  This is for life.  Doing it alone wouldn’t work. 

     I found I was having success.  I decided four months wasn’t enough of a baseline.  So I re-upped with another group.  By June 2011 I lost 30 pounds and eight inches in my waist, and even better, I managed to keep it off.  I sleep like a babe!  I’ve become active – I Nordic walk, power walking with poles, and I go to the gym.

     I’ve been in a regular group or an advanced group since I’ve started.  Although I’ve mastered the exercise and the food piece, my sense is I will always want the connection, the group.  The advanced group meets once a month over ten months.  Also, occasionally we can get together between the monthly meetings. 

     So now I’m giving back, paying it forward.  I serve as a resource for the wellness group program and I’m a regular “guest speaker” at one of the initial weekly sessions of each new 4-month program to share my experience and offer support.  I thank Wayne and Kerri [Hawkins, nutritionist] for saving my life.  All my tests are normal or optimal.  I’m off statins and blood pressure meds, and I just take Vitamin B-12.

     I’m still in contact with my group from 2010, since you develop friendships.  I still post to all the groups I’ve been in, and some people respond, even now.  

Read another story about weight loss.  Thanks to Howard Cloth for sharing his story.

Tuesday, October 14, 2014

Pharmacist-led diabetes disease management: We get to cruise control

This is Part 2 of the story of Sandra Leal, PharmD. Part 1 described her care for an older woman, Maria, at the El Rio Community Health Center, a Federally Qualified Health Center.  Sandra’s program received the Pinnacle Award in September 2014 from the American Pharmacists Association.

     We’re in medical suites, like the other medical providers.  We have appointments for patients who are referred to us for trouble with the control of their diabetes, or who’re struggling to get control, or starting insulin, and have issues with that, e.g., insulin resistance, being afraid of that, etc., so we try to spend a lot of time on the best medication regimen.  With Maria, I spent about 25 minutes yesterday to do an a1C, review her immunizations, and have her vital signs done by a Medical Assistant.  We’re a Diabetes Self-Management Training Site, and a Federally Qualified Health Center, so we have double accreditation, and get paid by Medicare for people like Maria, though here in Arizona, not by Medicaid.

     We’ll handle issues like affordability, complexity of the regimen, and how to fit it into their life.  That’s a big challenge when they’re taking multiple medications for diabetes, usually coupled with cholesterol, nerve pain, depression, etc.  So they take six to twelve medications. That’s a usual amount.  Yesterday 1 had a woman who was taking 18 meds.  Even WITH health insurance, $15 times six to twelve medications is amazingly expensive and unaffordable.  I really try to customize the regimen for their lifestyle.  I really listen to their needs, and work with them. 

     For providers, our automatic trigger is to increase and add another medication.  But it’s better to see why they’re not taking it.  My role as a pharmacist is to focus on that, and really delve into the barriers.  That’s my specialty, which is often overlooked by other medical providers.   Often they’ll send people to the pharmacy just to dispense medication. 

     The most common barriers are not understanding the importance of taking the medication and what it could do for her.  I really spend a lot of time with each medication and what it’d do, connecting it to the lab values.    They might complain about having to go to the bathroom a lot, fatigue, etc.  So I’ll emphasize that they’ll have more energy, and won’t have to get up three times in the night to go to the bathroom.  A lot of times it clicks with people, so they don’t say any longer, I don’t want to take them at all.  We connect the dots for them.  We’ll compromise.  Once we have one success, they come back, asking what else can we do? 

     We have a Collaborative Practice Agreement, so I can initiate insulin, order labs, and generate a referral to other providers.  That makes it more efficient.  We document what we do in the electronic medical record.  We’re med reconciling, adding the mammogram, recoding about the colonoscopy, etc.  That frees up time for the doctor to focus with the patient.  Providers in this model really work well:  it’s more efficient and effective for the patient, because their needs are addressed.

     For a patient like Maria with Type 2 diabetes, her next a1C test is due in three months, so she should come back then.  After that, when we get to “cruise control,” I’ll see her every six months.  When she comes back, we’ll take care of a lot of other issues too, e.g., an eye exam, foot exam, and immunizations.  I’ll make sure we’re doing those on a yearly basis.  We do eye screening here. That used to be a barrier to find transportation, so we worked with a local ophthalmologist to have screening on site. 

     If a patient has another chronic condition, like pain management or depression, we’re basically triaging things for which they should see another provider.  We’d send the patient and we tell the doctor and patient: Focus specifically on depression.  We write it down for the patient:  Your next visit is for depression specifically, because this is impacting your ability to do other things.

Thanks to Sandra Leal, PharmD, MPH, FAPhA, CDE for sharing her story.  Sandra is the Medical Director of Clinical Pharmacists.  Maria is a pseudonym.

Read another story about diabetes care.

Friday, October 10, 2014

Pharmacist-led diabetes disease management: She felt so empowered!

Sandra Leal’s story:
[Sandra and her clinic won the Pinnacle Award last month from the American Pharmacists Association for her clinical pharmacist-led diabetes disease management program.]

My patient Maria is an older woman on Medicare.  I started seeing her in May.  Her a1C [blood sugar level] three months ago was 15.9% – that’s ridiculous!  That’s twice as high as she should be.  She’s not on insulin.  We sat and I talked with her about my concerns, that she was not taking her meds, and didn’t want to take insulin, though that was exactly what she needed.

She was resistant to it, so I wanted her to work on her lifestyle.  She told me a lot about her personal history. She uses a cane since she was injured earlier in life, so it’s hard for her to exercise. 

We compromised, so that she wouldn’t start insulin that day, but the medications she was prescribed, she would take them every day.  We agreed that if her condition improved, she wouldn’t have to consider insulin.  She was medication naïve; she had been prescribed a regimen she wasn’t taking at all.  She had four or five other meds, which she was only taking sporadically, not on a consistent basis.

She felt very empowered after we talked, and did some major life change.  She stopped eating a lot of processed foods, started taking her medications, eating whole foods, and logging her readings.  She said she’d try to go to a dance class.

Yesterday she came back after I’d been calling her for three months.  We did an a1C test here in the clinic, with a point of care test, and her level was down to 7.4, which is amazing!  It improved more than half in that three-month period.  She felt so empowered!  Now our goal is to maintain this level of control. 
Read another story about changing habits related to diabetes.

Thanks to Sandra Leal, PharmD, MPH, FAPhA, CDE of El Rio Community Health Center, a Federally Qualified Health Center in Arizona, for sharing her story.  Sandra is the Medical Director of Clinical Pharmacists.  “Maria” is a pseudonym. 

Monday, October 6, 2014

Needy Meds: Making medicine affordable

Dr. Rich Sagall’s story:
     In the late 1990s, I was still doing Family Medicine and Occupational Medicine.  A medical social worker friend of mine told me about Patient Assistance Programs.  I was in Bangor, Maine and she was in Mississippi.  She had made a small database that she kept on her laptop.  During home visits, she would look up the programs her patients could make use of. 

     I’d taught myself to code HTML.  I thought, this would be a good project to use that, so I started inputting data on patient assistance programs on weekends and after hours.  I put a counter on the website.  I felt guilty about it, because my own visits to the website would inflate the count.  At first, there were maybe 50 visits a day; maybe three of those were mine, so the total really wasn’t so big.  

     Now Needy Meds has grown over the last 17 years.  We have 20 employees, data on 7,000 points of savings (programs, coupons, co-pay cards, camps, etc.), 13,000 free/low cost/sliding scale clinics, and 8,000 to 10,000 visits a day to our website.  We’ve gotten a lot of emails and letters from people about their savings, saying they never knew about patient assistance programs before that.  We make medicine affordable when it’s unaffordable.

     But I can’t tell you about the specific patients we’ve helped.  That’s because of our philosophy:  we want to put the fewest obstacles in the way of people getting the information.  So we don’t have registration, or log-in, or sign-in.  We want access to be anonymous, since some people were concerned about putting their personal information on the Web.  They just type in the drug name, and we give them all the information, including an interactive pdf.

     Now we’re way beyond just medicines; now we have copay cards, coupons, disease-based assistance (programs based on the diagnosis), programs to help people apply for patient assistance programs, including 1,000 state/local government assistance progs, and 3,000 free clinics. 

     We keep all the data current, reviewing every program at least every six months. 

Advice for patient advocates:  Bookmark this site.  There’s no such thing as a free lunch, but sometimes there are free meds.

See a story on the cost of medication, or see Dr. Sagall's blog.

Thanks to Dr. Richard Sagall of NeedyMeds for the interview.

Friday, August 29, 2014

A Don Berwick story: This is the evidence you’ll need

John Sundman and Betty Burton tell about their son:
Jakob was born two years after our daughter.  It was pretty dramatic – the doctors did these tests and looked at the results and then asked Betty and me if we wanted to buy burial insurance!  It was really tacky!

He was a preemie, six weeks early. He was pretty big, at five pounds, seven ounces, so they were wondering whether we had gotten the date of conception wrong.  But his earlobes were translucent, and there were other signs that showed that developmentally he was not too far along. His breasts weren’t formed; he didn’t have nipples. His ears were not all the way formed.

In his first year, he was sickly, and didn’t put on weight.  He didn’t meet any developmental milestones.  We were aware of that because we were not totally inexperienced parents; we’d had another child already.

Even accounting for that, he was just a lump. When I was changing his diapers, I said to Betty:  I don’t think this baby can see.  He was six weeks old at the time.

We went to a pediatric ophthalmologist who diagnosed him with strabismus (lazy eye) and nystagmus and said we should patch one eye.  As an infant, he was sensitive to light, so it was hard to look in there; and the doctor can’t really tell.  He really needed to see Jakob’s eyes under anesthesia, but he was too weak and sickly; so the anesthesia could kill him.  That went on for a long time.

We went through a couple of doctors who were just arrogant.   One said the main problem was a nervous mother.  But Betty had worked on her PhD in molecular genetics at Purdue and used to teach pre-medical students, so she was not intimidated.  She’d say, I graphed his weight; here’s the normal distribution; he’s a standard deviation below; he’s not growing. 

He didn’t show any interest in anything for a year, not in toys, and didn’t reach for anything, he was just kind of there.  Then in a toy store once, he reached for a ball, so I bought that thing so damned fast!  You want it, kid, it’s yours.

We had to take him for medical care from our home in Westborough to Harvard Community Health Plan in Harvard Square in Cambridge.  That’s a long shlep to see the doctor!  Then we moved even farther away to Gardner, 57 miles away from Boston, to a much better house. 

They put Jakob under anesthesia and learned that his retinas were all damaged, with lots of scarring.  They did a blood test that showed toxoplasmosis, a parasitic disease you can get from cats.  That’s why they say to stay away from kitty litter.

The classic hallmark of that is that it almost always attacks the eyes and the optic nerve.  It attacks the central nervous system. It happened when he was a fetus, they said, telling us that the infection is over now, that we should take care of him and he would be fine. 

Betty had a friend who was the head of nursing at UMass Worcester, with access to their medical library.  This was before the Internet, when medical information was hard to access.  It was like the Man from UNCLE. She found a book, Infectious Diseases of the Fetus and Newborn, a 1200 page textbook with a 90 page article on toxoplasmosis.  Betty was reading it to me until 4 a.m. in bed, and said, Oh my God, John!  Two-thirds of infected babies spontaneously abort.  Most of them have mental retardation, and all of them have eye problems.  There’s scarring of the brain, since the organism eats the brain matter.  It can go into the heart and lungs too.  

Forty percent of the world population adults have toxoplasmosis, but if you get it as an adult, your immune system takes care of it.

Betty found an article by Jack Remington of Stanford University Medical School, who said we CAN do something.  We had changed doctors a couple of times, since we were just being jerked around. This was the article that was in the textbook

The doctors did a CT scan and the report said Jakob had hydrocephalus. So we went to a pediatric neurosurgeon, the best in Boston.  He told us, I can’t operate for reasons A, B, C, and D.  He’ll just be a vegetable, so just institutionalize him and have another child. We were outraged! 

We did get a second opinion which said the baby cannot be operated on for hydrocephalus, but it’s not causing any problems right now anyway.

Betty got in touch with Jack Remington; who said, We’ve been treating this in pregnant women and newborns in France, on a drug regimen they’d developed.  Dr. Remington was pushing for wider adoption of it in the U.S., but the FDA has not approved the medicines for this purpose, so we would need a doctor to get a waiver to use that protocol.  Dr. Remington said he would then guide our doctor through the protocol.

Jakob was now 18 months old, and somewhere along the way, we had had it.  We wrote to the head of Harvard Community Health Plan saying, Your obstetrician screwed up by missing the diagnosis even though Betty reported all the signs while she was pregnant. 

All three doctors were condescending; we only liked the ophthalmologist.  But the lawyers said the only one we could sue was him!  He was the only one who had done anything good for Jakob.

To placate us they assigned Don Berwick, because we had good reason to be angry.  He was the eighth pediatrician we’d seen.  He was great.  He listened to the whole history. Betty met with him for an hour and a half; he made sure he had the whole picture.  He didn’t interrupt, or tell us where our thinking was wrong, or that our facts were wrong, like other doctors.  He said, Let me talk to Jack Remington. 

They had Jakob take two powerful neurotoxins - drugs that were good at killing toxoplasmosis.  The first is pyrimethamine; the second is sulfadiazine, to kill the organism; the third part of the cocktail is folinic acid, which mitigates the toxic effects of one of the other drugs.

They got it all worked out.  Don was about to go on vacation out of the country, so he left it with a woman doctor who was the head pediatrician. He was a pretty young doctor at the time in 1983. 

So we start the drug therapy.  We’re about four days into it and suddenly Jakob is shaking on the floor, having a seizure. I call an ambulance.

We found out there were two things going on:  the baby’s weight was said to be pounds instead of kilograms, so they were basically giving our 7 lb baby [???] the dose for a grown woman.  The overdose had caused the seizures.  On top of that, the doctor had prescribed folic acid instead of folinic acid, so there was nothing to counteract the chemo agent. 

After his vacation Don came back and gave Betty the medicine bottles, saying we should hold onto them.  The implication was that if we wanted to sue them, we would have this as evidence.  Betty left with the bottles that showed the errors by the prescribing doctor.

For next six months, we had a doctor we could trust, on the same page with us.  He took charge.  Jakob started to do better. 

He started going to early intervention.  When he got to be college age, he attended classes at Bridgewater State College.  Now, at age 31, he has organized people to help in food distribution.  His vision is poor, but he can read normal-sized print.  He calls it “Facebooking” because he has to hold the book so close to read.  I’d like for that doctor who said he’d be a “vegetable” to see him now!

Betty and I were very happy with Dr. Berwick's medical care of our son and indeed of our family. We do believe that he saved Jakob's life, for if Jakob had not been treated we're sure we would have lost him to the disease. And Don was always kind, thoughtful, humble, hardworking, and clearly motivated by a love of children and of ending or reducing suffering.

Thanks to John and Betty Sundman for sharing Jakob’s story. 

Read another story about Don Berwick.