N=1, my experience with cost, care and insurance

By Robert Fogerty, MD, MPH

“You look nice today. People don’t come to chemo in suits very often.” The friendly and familiar receptionist mentioned as I was checking out, the always full jar of lemon flavored hard candy on the shelf between us. As I pocketed a few of the candies, I managed to swallow the nausea and metallic taste just enough to say, “Thanks. I have a job interview today.”

During my senior year in college, with medical school acceptance letter in hand, I was diagnosed with metastatic testicular cancer. Initially, life became planning surgery and meeting doctors, but early in my treatment course I received a letter that my health insurance had been exhausted and I would no longer receive any health benefits. This was after my first of four chemo cycles, with a major surgery still to come. Needless to say, this was a problem. My parents were both well educated, a lawyer and a chemist-turned-teacher, but this took everyone by surprise and presented a new crisis.

We responded by dividing up tasks. My parents quickly inventoried all the assets, including the family home, and my sister called around to all the hospitals to see what could be done.  She called the local and state governments asking for advice while I simply tried to eat food and get to class to graduate on time; I couldn’t have another tuition bill on top of my health expenses. I also started to look for a job, with a job came insurance – this much I knew.

I went to the interview, a job as a management trainee in a car rental agency, with hopes that this job would be something I could get, could do during treatment, and would provide the insurance that would save my family from financial ruin at my hands – my disease. I went to a Jesuit college and learned that truth and honesty are paramount.  So, I told the recruiter that I had cancer, I was in treatment, and that I would likely be done soon – all true.  I didn’t get the job. I still didn’t have insurance and my next chemo session, with its massive bill, was coming very quickly.

My sister learned that this would not be fun. One hospital said to her that they would treat me and then take us to court to get paid. Thankfully, I went to school in Massachusetts where a law was on the books that allowed me to enroll in health insurance without a pre-existing condition exclusion because my insurance being exhausted counted as a special qualifying event. I enrolled in an individual insurance plan, my care went uninterrupted, and I graduated on time. To this day, my sister and I remain grateful to Massachusetts for that single law, which is as much a part of my success as cisplatin and etoposide, the chemotherapy agents I received.

The bills still mounted, but were manageable. I survived, personally and financially. I pushed off medical school for a few years to get my life back in order, and moved on. I had many scary moments during my treatment, from the plastic surgeon telling me my arm might need amputation to my neutropenic fever to being discharged just in time for my college graduation.  However, what bothers me the most was, and still is, the sense of abandonment from my society when my insurance ended.

I had insurance, my parents had good jobs and were highly educated, so how was I left in the breeze?

Now that I’m well past treatment, married to my then-girlfriend with two beautiful children, and currently a practicing physician at a major university, I still find myself troubled by the “Fogerty insurance debacle of 2002.”

With all the talk about health reform, I always kept quiet in the back as those around me in residency (which I completed in 2011) offered their opinions, and I realized that most of my colleagues were blissfully ignorant as to the financial burden of major illness. Between my own illness and my residency graduation, I also lost both my parents, got married, and had my first child.  By my early 30s, I’d experienced healthcare as a provider, patient, son, husband and parent. Generalizations are always dangerous, but I felt as though nobody around me understood the financial impact of this massive industry.

This gap in knowledge bothered me, so when I finished my training and joined the faculty, I dusted off my Economics degree and did something about it.

Residents and medical students that are still in-training are entering a new world of healthcare, one where financial ignorance is no longer permitted. My small part is to begin and remove the blinders, to expose them to the other stress in their patient’s experience. There are safety issues and financial waste throughout our system. Bringing these to light in an educational sense provides me with personal and professional satisfaction.

What did this Massachusetts law mean to me? When I recovered from my disease, my family and I had taken a physical and financial blow, but we could recover. Two years later, with my credit intact, I was able to borrow money to attend medical school. Without insurance, this never would have happened. There is more to surviving disease than outliving the pathology. The financial scars of medical care can be just as disabling to survivors of any disease, and as we grow and change as a profession, it is important that our providers of the future, today’s residents and medical students, have an understanding of the financial realities of their jobs.

Robert Fogerty, MD, MPH is a practicing Hospitalist in New Haven, CT and Assistant Professor at the Yale School of Medicine. The views here are his own.

9 Comments on “N=1, my experience with cost, care and insurance

December 16, 2013 at 3:02 pm

Excellent message to healthcare professionals. My brother went through a similar situation – it is frightening and overwhelming. Thank you for sharing your story and trying to help such a large problem for patients, their families and care providers.

Susan Joo
December 16, 2013 at 3:02 pm

Dear and highly honored Dr.Robert Fogerty,

I, Susan Joo same victim as you,of millions of others of a sick Healthcare System, that allowed and actually bloomed of, or rather doomed by the so called “pre-existing conditions”. All of us, victims have our own heart wrenching stories. Some not even able to tell that, due to their senseless, unacceptable deaths, because of an ignorant, heartless system, that operates only with money, lot’s of money. Money, that if not available – no insurance coverage, or exhausted insurance only-will deny the Care and Cure of the Citizens. I am so thankful to you, that through your sad experience, but you want to change the System, and work diligently for a better Healthcare System, that will truly fit for it’s name, and deep meaning.
Wishing you long healthy life, much success! I respect and love you as one human to another, you give great example to us to follow.
With much respect;
Susan Joo

Philip Lederer
December 17, 2013 at 3:02 pm

Thanks so much for sharing your story.

Laura Henze Russell
December 18, 2013 at 3:03 pm

Beautiful story! I’d love to connect to share my Costs of Care story, and engage your help. I had chronic illness for 20 years, then wheels off the bus for two, nobody could figure it out, or believe my bizarre symptoms. I gave up hope. Then by the grace of god, one of the legions of doctors (scores of specialists were insulting, arrogant and wrong, or baffled and stuck inside the paradigm) figured out I had developed mercury poisoning from dental fillings. He heard a talk by a humble parasitologist in Arizona who was overwhelmed with patients with unexplained dermatopathy and neurological symptoms, and over the years figured out it was caused by reactivity to mercury and other dental materials, and could be cured.

This is not rare, just rarely reported, as many people with common defects in methylation and detoxification pathways aren’t great excreters, so build up toxic levels over time. This is well known elsewhere, banned in Scandinavia, warnings and phase downs elsewhere, but the FDA and ADA still love the stuff.

The FDA refuses to follow the recommendations of its own Scientific Advisory Panels to restrict it from vulnerable populations and issue patient warnings. As a fellow economist, I invite you follow the money and conflict of interest trails at the ADA. They have erected a Cone of Silence on the subject in their Code of Ethics, in the journals, the medical and dental professions, state dental boards, dental schools, student dental associations, and the media through threats and actions to pull ad budgets, and pay gobs of money to enforce it.

You know the saying about 20% of the people causing 80% of health care costs? Take away the toxins, and that 20% could easily shrink to 5%. The savings are enormous, in illness, Rx, sick time, disability, FMLA, unemployment; and heartache of loss of health, enjoyment, work, function, friends and family as you become a shadow of your former self.

Have you read Dr. Thomas Duplinsky’s article on mercury’s impact on dentists? Its an amazing study, had to go to Canada to get it published.

I started Hidden River Health Challenge, a Social Innovation Enterprise to end amalgam by working together to move people and markets, as the ADA will fight tooth and nail to the death to keep regulatory rigor mortis in force at the FDA CDRH Dental Unit. It is an all volunteer effort.

Is this of any interest? Transparency and simple common sense and duty of care ought to include disclosure of medical device information: benefits, risks, side effects, and where to report side effects, as well as specific informed consent. Instead we have no such requirements but secrecy and obfuscation, “silver fillings” brought to us by ADA PR.

The externalities foisted by the dental sector on the rest of the medical sector, individuals, families, employers, insurers and government are staggering, and arguably one of the biggest drags on our economy. Especially as it undercuts the vitality of our young people who get it through the placenta and breast milk, then in fillings (boys with CPOX4 are especially vulnerable per James S Woods 2012, 2013, who retracted his earlier findings of amalgam safety). It cuts down people in the prime of life, and for boomers and older adults, makes life nasty, brutish, costly and long (ApoE4 is especially vulnerable per Boyd Haley, Mutter, Deth and others). It also harms people who just have garden variety methylation and detox pathway defects, this I learned from personal experience.

In addition to the website http://www.oceanriver.org/hiddenriver, there are ways to engage at http://www.facebook.com/hiddenriver, and a Care2 Petition, Tweet Race, and more.

December 18, 2013 at 3:03 pm

Remarkable piece, Dr. Fogarty.

Thank you so much for sharing, and for your continued work in raising awareness of this issue.

We are proud and happy to be members of the strong and growing transparency ecosystem, working alongside gifted and passionate people like you.

Robert Fogerty
December 19, 2013 at 3:04 pm

Thank you all for reading and sending such encouragement. We live in a great age, in a great society, with unbelievable promise. I have confidence that we will sort through all these issues, and we will do so together.

December 20, 2013 at 3:04 pm

Beautiful story, thank you for your words! You have reached many, we are listening.

December 23, 2013 at 3:05 pm

Dr. Fogerty
Thank you for sharing your story and experience. I’m probably going to get a lot of negative comments for this, but here’s what I’m puzzled by: it takes A LOT of medical spending to exhaust your insurance benefits. Do you think all that was spent was, in fact, wisely spent and in any way at reasonable levels?
My experience with the healthcare field is that my son, who was 10 years old had to be admitted to the hospital for a ruptured appendix and stayed in the hospital for 2 weeks. The hospital charges alone were more than $50,000 and that did not include any doctor fees, any radiology, any procedures, any anesthesia, and not the ER visit. Altogether, the charges came to be in the neighborhood of about $100,000. I find that the pricing/costing of healthcare is completely and utterly absurd and out of line with anything that resembles “reasonable”. I think that as doctors, we need to work on that part of the equation too. If fact, without it, we’re doomed. It’s another bubble that will burst!

We all need to look at the medical charges that are submitted and make a judgment: was it worth it? Was it reasonable?

Daniel Robert "Bob" Snodgrass
December 31, 2013 at 3:05 pm

I a Bob, or “Snodgrass Trigeminal” in a search; born Daniel Robert, which has nothing to do with the food that fell out of my mouth on January 15, 2007, at about 5:43 PM, being a healthy couple of months past 50-year-old working male. Missing only wisdom teeth, went to my Dentist of over 30 years to Oral Surgeon to Neurologist in ten days, diagnosed TN 1.

First line of defense was that I tolerated the burns for several weeks, because it didn’t hurt as much as the Trigeminal pain, and had a six month Carbatrol induced Toxic Epidermal Necrolysis recovery with Cyclosporine and IVIG therapy.

I was desperate for action, having that half a year to do a little research.

It was at the discretion of the Neurosurgeon team, though they recommended the SRS Cyberknife, performed a 7-pad MVD, because of a last-minute scan in November 2007.

The MVD lasted two weeks to the day, within a year, I would have two unsuccessful Radiosurgeries, the first lasted two weeks to the day, the second radiosurgery left me with Social Security disability, and I live in public housing, where I advocate for my elderly and disabled neighbors, because I am handicapable.

The original little spot that runs from my upper right lip to my lower right eyelid occasionally causes tears from the unknown, with a boatload of variables, and some many, very dear Friends.

Grateful for cognitive-regeneration due to Trigeminal Neuralgia treatments without hair loss is funny to me, as is the milk hasn’t turned to cottage cheese in my cabinets since 2010, and being down from 51 to 17 pills daily, while waiting for 24th century technology.

I cherish my cancer blankets, they do that for Radiosurgeries. I have had marvelous and caring healthcare professionals, from my local Elliot Health System, to Massachusetts General and Dartmouth Hitchcock Medical Center.

Statistically Yours, bob:)


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