Author: Hazel Becker

Something needs to be done about the medical billing mess! And no, I still don’t think a single-payer system is the only way to fix it.

It would be wrong to say that I “had to retire” just to free up enough time to deal with all the medical bills. But not spending time working does make it easier to “find time” to sort and sift through them to figure out what’s been paid and what needs to be paid. It should not be this hard. And, it doesn’t have to be.
In this post I’ll lay out what I think the problem is. I plan future posts on the subject to explore options for fixing it.
Here are some real examples from our records:

A melanoma specialist told us he sent biopsy slides to Boston University for another reading. A bill came from a laboratory, and another bill came from Boston University. The dates for these services don’t match each other or match up with any of our appointment dates. The explanations of benefits from the insurance company that appear to match up have different names from the ones on the bills.

A service had to be pre-approved, and we were asked to pay the copay of $392 on the day of service. Then we received another bill for $30.31, with no explanation of why it was more.

We received a bill dated 8/23 and paid it 9/12. The bank said the payment cleared 9/19 but the payment wasn’t reflected on the statement dated 10/8. The statement said the bill was seriously past due. Seriously?

A surgery bill arrived from one hospital for services provided at another facility. (We are grateful that this bill wasn’t sent until after the insurance payment had been received. However, the bill said the account was past due.)

Matching up all the bills from the orthopedist with the superbills from the visits and the insurance payments reflected on the Explanations of Benefits (EOBs) was a nightmare. This was the first time in years that this physician’s office has filed directly with the insurance company. We didn’t know how much we would end up owing so we held off until we got the EOB. Then, his office began adding interest to our bill before the first insurance payment was made, so the numbers never matched up.

We went in for a post-surgical visit and paid the copay. We questioned the surgeon’s cursory statement that the melanoma team at the hospital thought we should follow a “watchful waiting” regimen. Eventually the oncologist came in and explained their thinking. We were billed for a second copay because we saw both the surgeon and the oncologist.

We received a bill from a laboratory in L.A. with “address service” requested to an address in Cleveland. We haven’t been to L.A. in years and didn’t know any services had been provided there. We presume this had something to do with the slides sent to Stanford but no proof. We had already paid Stanford for the services we thought they provided. Aetna paid the bulk of the charges, so we paid the bill … 
I could have weeded some of those examples out – but the cumulative effect is part of the problem. When you have a pile of bills, all in different formats, with statement date and service date in different places on each one – and not always standing out from the clutter of other “stuff” on the bill – it’s pretty easy to think you are caught up in a conspiracy designed to make you lose your mind. It’s almost enough to make me rethink my opposition to a single-payer system …
Almost, but not quite! I also have two positive experiences to report. The first is our recent “transactions” with Johns Hopkins, which had the potential to be just as messy on the billing side as some of the ones I’ve recounted above. We’ve seen two doctors and had services provided by a number of departments at Hopkins, including CT scan and MRI. We paid copays when services were rendered at the Green Spring facility and never saw another bill from them after the insurance company paid. We’ve been to the hospital outpatient department and Cancer Center three times. So far, we’ve received a consolidated bill for the October visit showing all the services, all the insurance payments, and a total due. It’s broken down by provider and date of service, with services listed separately, insurance payments credited against each charge and a subtotal due to each provider. It allows us to pay the small amounts remaining in a single payment of the total amount due. It will be paid quickly because Hopkins offers a 10% discount if it’s paid within 30 days.
The second positive experience followed my visit to my physician for bronchitis, the first doctor visit I’ve had since I went on Medicare. Remembering what it was like when I sorted and sifted through all the bills that came for my mother-in-law, I was dreading this. But I’m pleased to report that my fears were unfounded – Medicare paid its share, and before I even got an EOB, I discovered that my Medigap policy had paid the balance.
This makes me look forward to Robert’s Medicare initiation on March 1. I’m glad to be leaving this FUBAR system behind!
I’ll think about this some more and do some serious research before I write about this subject again. Perhaps I can make my thoughts come together in some serious reflections. It’s worth a try – anything is!

Our trips to Johns Hopkins for the melanoma GVAX vaccine trial have almost become routine now that we are half-way through the trial – two injection visits done and two to go. But I did have another indication yesterday that our efforts to fight off another attack of this dreadful disease are only just beginning.

Thankfully, there was no drama associated with this visit. Our study nurse, Susan, had Robert lie down while the phlebotomy nurse drew all the blood samples – a procedure that made him pass out before the first injections on November 8. This time the precaution was unnecessary as this time there was no similar reaction. And, his blood pressure stayed within the “normal” range at about 135/84 – numbers that are high for Robert but nowhere near the dangerous level that they reached last month.
We met with Dr. Lipson next, and he did a very thorough exam – particularly, palpating every lymph node Robert has left and examining every inch of his skin. He asked about the history of a few “spots,” and that led me to bring up a subject that had been on my mind ever since our meeting with the dermatologist a few weeks ago. As I told Dr. Lipson, I had two concerns after that visit:

First, I asked the dermatologist to show me any spots he was concerned about and help me learn how to recognize abnormalities of concern. As he carried out his exam, he pretty much ignored that request and froze a few spots without showing them to me first.

Then, he said that Robert should have skin exams every four months. When I pointed out that Dr. Lipson had suggested a three-month frequency for the skin observations, the dermatologist repeated that HE felt four-month intervals are all that’s needed.
Dr. Lipson asked why I had the reaction I did – was it because of the advice the derm gave, or because of his manner in giving it? I think Dr. Lipson wanted me to consider an aspect of our health care choices that some people might not give much thought to: how much confidence would I have in this physician going forward? If I had confidence in this man’s skill as a dermatologist, would I be able to  “forgive and forget,” and be content if Robert continues under his care?
It’s a hard circumstance for me to be in. I certainly felt that this doctor gave Robert all the attention he needed during the November visit and thoroughly examined his skin. He communicated well with both of us even though he tacitly declined my request for a teaching session. All in all, I have no reason to doubt his skill and proficiency. Further, I have no reason to believe that there was any deficiency on this doctor’s part that caused Robert’s melanoma to go undiagnosed for so long – if there’s blame to place, it’s with Robert and me. Some of the top melanoma experts in this country have discussed Robert’s case with us in detail and have not indicated that they thought any signs of melanoma went unaddressed in his previous medical care. Melanoma sometimes presents like a cyst and sometimes doesn’t show up on the skin. I don’t believe there were indications of melanoma that any of Robert’s physicians did not recognize.
Dr. Lipson told us, as we already were aware, that Robert is a likely candidate for a recurrence of melanoma, having had the first one. He wasn’t talking about a recurrence at the same site, though he said that’s certainly possible – his concern was about a primary cutaneous melanoma cropping up at another site and growing very quickly. He explained, as has Dr. Sharfman on our two visits with him, that this period (in the first few years) is the one in which new primary sites are most likely to occur, and that’s why most melanoma specialists suggest skin screenings every three months during that period. And so, even if we have confidence in the dermatologist Robert’s been seeing – which we have no reason not to – the education I’m seeking is a good idea. He suggested that we see Dr. Tim Wang, a Hopkins dermatologist who has “made it his mission to educate patients” about what to look for on their own skin. Dr. Lipson said it might not be necessary to see Dr. Wang every three months – another dermatologist at Hopkins could take on that care if we decide not to go back to the guy we’ve been seeing.
It’s not my decision to make, and if Robert decides to continue with the current dermatologist I’ll figure out how to deal with that. But in any case, I do want the education from Dr. Wang and will try to get that arranged for our February dermatologist visit.
Cycle 2 injections
The second set of injections of the GVAX vaccine went pretty smoothly. Both Dr. Lipson and Susan told us that we should expect Robert to have a somewhat more vigorous reaction to these shots – more redness, swelling, and itching. Susan explained that now that the vaccine has been introduced into Robert’s body, his immune system should be on the look-out for it. When the newly injected cells meet up with cells in his immune system, they “have a party” and that causes swelling, itching, and redness. I hope it’s more akin to having a fight than a party – that’s what immune cells are supposed to do. But in any case, the reaction may be more intense this time.
Robert’s reaction when he received the injections was about the same as last month. At the sites on his thighs closer to the groin, he didn’t feel very much as the vaccine went in but did feel a little burning after a while. The injections at the lowest sites, closest to his knees, caused a burning sensation as they were given. This may be because there is more flesh on the upper thighs – just a guess, but it seems like a logical one. Susan explained to us last month that the syringes don’t have exactly the same amount of vaccine (what’s important is that the total amount injected be the same each month), and she uses the higher doses at the higher sites. As far as I can tell, this is all theoretical – the theory being that the fleshier upper-thigh area would be able to handle the higher doses. It seems to work out that way – the upper sites don’t burn when going in but get bigger reactions in the long run.
Susan also noticed the other reaction that repeated this time. After a few of the injections had been completed, she commented that Robert’s breath was beginning to smell like garlic. She explained that this is because of the dimethyl sulfoxide (DMSO) used as a preservative in making the vaccine. DMSO is made by oxidizing  dimethyl sulfide, a by-product of the wood-pulping process known as “krafting.” It’s been used as an industrial solvent for more than 60 years and in medical treatments for 50 years because it is known to penetrate the skin without damaging the tissue. When it is used as a vehicle for topical administration of anti-inflammatories, a known side effect is the development of a garlic taste in the patient’s mouth. Susan has noted “garlic breath” in other patients to whom she has administered the melanoma GVAX vaccine.
So far, that’s the most excitement we have to report for cycle 2. All in all, not a troublesome day.
Call or comment here if you have questions.

However you look at it, yesterday was not a normal day for Robert and me. We had already cast our ballots, thanks to the early voting offered by D.C. I did an early run to the park with Chewey, and we were off to Johns Hopkins at about 8 a.m. to get the first of four doses of the GVAX melanoma vaccine that will be administered for the clinical trial Robert is enrolled in. It was the start of another one of those days that didn’t go quite as planned.

We checked in at the phlebotomy lab in the Weinberg building at about 9:30, our appointed time. After some initial confusion about who was going to take the blood, we went into the lab with Robert Gray, the nurse who draws samples for our trial. Just as he was finishing the last of his tubes – one of two that seemed particularly big to me – his patient checked out. As in, passed out!
This wasn’t just a case of Robert nodding off in his chair, although he was snoring pretty loudly! I’ll spare you all the details, but suffice it to say it was a frightening time for me with all the flurry of activity that surrounds a “code” in a hospital. Afterwards, Robert’s doctor carefully reviewed all that happened, including his recovery and responsiveness after he regained consciousness, and came to the conclusion that he had a vasovagal response – to what, we are not sure. Essentially, as Dr. Lipson explained, his body was pumping adrenaline, and that started a “calm-down” reaction. Once all the adrenaline was gone, all that was left was the calm-down reaction, and Robert passed out.
Essentially, in a vasovagal response the patient’s blood pressure drops suddenly, causing him/her to faint. These reactions are typically seen in response to anxiety, stress, standing too suddenly, dehydration, or a drop in blood sugar. We ruled those causes out – Robert was not anxious or stressed by the prospect of getting the vaccine, and he has never been squeamish at the sight of blood or having blood drawn. His one previous, similar incident happened when he was being treated for a giant tear in his retina and the ophthalmologist injected avastin into his eye. (I wasn’t there – and am glad, in retrospect, that I wasn’t! It was frightening enough to have it happen in a very fine medical institution, where all the systems and personnel seemed to work very well.)
After my initial, fearful reaction to watching Robert lose consciousness and come back to some semblance of himself, I was concerned that they might not give him the vaccine. Robert regained his wisecracking sense of humor pretty quickly, and Dr. Lipson was quick to rule out a seizure or other condition that could have caused him to lose consciousness. So, after we rested for a while, we all agreed to go forward.
The procedure itself was as we expected. Susan, the study nurse, applied lidocaine on Robert’s thighs in patches about three inches apart, three per leg, and covered each one with a bandage. About ½ hour later she returned, and another nurse arrived from the lab with the GVAX syringes. Each injection took about a minute. After she finished each thigh, she applied band-aids to each injection site. A little after three we were done.
After Robert dressed and we sat a little while longer, Susan came back to check us out. We were home by about 4:30.
Not the day we were expecting. But neither of us is complaining, either. We got what we went for – a chance that, if there are melanoma cells floating around in Robert’s body somewhere, his immune system will react to this vaccine and kill them off. Perhaps we will never know whether it works, but we are ready to complete the study procedures on the chance that these researchers are right.
Tomorrow – a punch biopsy. We plan for Robert to be lying down when they take the blood this time, and I won’t be surprised if the “other” Robert, Nurse Gray, draws the samples more slowly next time.
I’ll post again if there’s anything else to say. Feel free to call if you have questions.

Robert is scheduled to begin the GVAX trial at Johns Hopkins next week. If you want to know what it’s all about, and/or why we decided to go this route, this post will explain.

First a refresher – this trial is being done to test an experimental vaccine that is intended to boost the body’s immune system to fight melanoma. Although we know that there are no active cancer cells growing in his body, we don’t know whether there are tiny, inactive cells (micro-metastases) lurking in there somewhere that might decide to become active at some point in the future. If there are, we hope this vaccine will stimulate an immune reaction in his body to kill them.
Robert is at high risk for recurrence of his melanoma because this was a very deep lesion – 9.5mm. That means that it extended down into the dermis, close to where microscopic cancer cells could enter the lymphatic system and might be transported to other parts of his body. So, while it would be nice to think that all the cancer was removed, as the biopsies indicated, our doctors don’t think it’s prudent to count on that. Therefore, they have recommended that he participate in this trial so that he can get the vaccine.
The trial’s purpose is study the safety of the vaccine at different doses. The first study group received a low dosage of the vaccine, and when no serious adverse reactions were found, the second group began to receive higher doses. Robert is in this second group.
The vaccine will be administered four times, at 28-day intervals, beginning on November 6. Each month, the correct amount of vaccine for Robert’s body weight will be injected at six sites on his arms and thighs. One to two hours beforehand, a skin-numbing medicine will be applied to each vaccine site. After the injections, we will wait about a half hour to see if there is a reaction. As long as there’s no bad reaction, he will be discharged.
Two weeks after each vaccination, Robert will call our study nurse, Susan, to report on any side effects he has had from the vaccine. Common side effects are redness, swelling, itching, and/or soreness at the vaccine sites. Less-common side effects are flu-like symptoms, including fatigue, rashes, low-grade fever, and chills, as well as swollen lymph nodes and flare-ups at the injection sites. Susan told us that so far none of the study participants have had more serious side effects.
After the first and fourth injections, we will return to Johns Hopkins two days later for a biopsy of one of the vaccination sites. The biopsy sample will be studied in a research laboratory and/or by a pathologist to look for effects from the vaccine.
One month after the final vaccine, in late February, Robert will have a check-up including blood work. The final visit will be April 23, when he will have the six-month CT scan of his chest, abdomen, and pelvis and a brain MRI in addition to the physical  exam and blood work. I guess that makes April 23 my next, highly anticipated date with N.E.D. …
The Food and Drug Administration considers this GVAX vaccine to be a kind of “gene therapy,” and the FDA wants all patients receiving gene therapy to undergo five years of follow-up, looking for “late side effects.” These annual visits will include physical exams, blood tests, and scans. If possible, we will have the follow-up care with Dr. Lipson here in D.C. at Sibley Hospital, which Hopkins has acquired recently. Dr. Lipson will be starting up a research program at Sibley, which is just a few miles from our house.
So – that’s the scoop! Questions? Feel free to call.

Nearly five months ago I suspended my consulting and freelance business in the face of Robert’s then-impending surgery to remove a large melanoma from his scalp. I was too distracted, not to mention too busy with medical appointments and emotional upheaval, to concentrate on work, and I didn’t want to let any clients down by not meeting deadlines or by handing in sub-par assignments.
Now that the scare of a four- to eight-month prognosis is behind us and Robert’s status is “healthy” and “No Evidence of Disease,” the question comes up from time to time: am I “ready” to go back to work? And the answer is – NO!

I had a very busy summer playing Nurse Ratched in June and July, and then traveling to New England in August and to Asheville and Ft. Lauderdale in September. October has been a waste, basically – I have nothing to show for it. As a matter of fact, this post was inspired by my weekly Saturday phone date with my mother, who (as usual) asked what I had done this week. I couldn’t think of a thing! I was busy all week, to be sure – there weren’t any patches of time when I batted around looking for something to do. Where did the time go?
I’m sure if I thought hard about it I could come up with something useful or productive to report for the last seven days. But off the top of my head, I can only come up with things I didn’t do. Two quickly come to mind: write about the upcoming melanoma vaccine trial at Johns Hopkins, and start the email correspondence with our Thanksgiving crew to plan the menu.
Both of those things will be on my immediate list of tasks. But first, I’m taking on an even more important one – setting priorities for this next period of time, however long it lasts. I’m sure this list will change over time, but here’s my starting point:

1.      Taking “care” of Robert
As I told one of the nurses at Hopkins last week, my main job right now is to see to it that Robert can continue to do what he wants for as long as possible. To some extent that means looking out for his well-being when he loses track of what’s important. I have to walk a fine line here so I don’t become the nagging, fawning wifey I’ve never been – but I do want him to wear sunscreen and a big floppy hat, get some exercise, and do whatever else the doctors tell him to do.
I plan to accompany him on all his medical appointments for the vaccine trial. I also plan to go with him to the dermatologist on a search for any suspicious spots on his body. I want to learn what to look for and photograph any moles or freckles that bear watching, as Dr. Lipson  suggested.

2.      Taking care of myself
I probably can’t do #1 if I don’t do this, so I might as well state this priority near the top of my list.
My gym schedule will undoubtedly slip a bit – I can’t work out four days a week and at the same time go to all those medical appointments, particularly not in weeks when we have to see doctors two or three times. I’ve had a regular morning gym routine for months – muscle training on Mondays, abs and stretch on Tuesdays, active yoga on Wednesdays, and TRX on Fridays. I’ll go as often as I can, and fill in with long walks with Chewey, yoga at home, or some kind of aerobic exercise as I need to.
I also plan to keep working on my diet. I’ve lost about 25 pounds and would like to keep it off. Besides, I like cooking and eating healthy foods. I’m going to try to wrestle some of the weekday cooking away from Robert, even if it means putting up with how he “cleans” the kitchen afterwards …

3.      Working on this website
I registered my name as a URL last winter with the intention of moving my work website there over the following year. When I started this blog last June, I did so at that URL. As we approach time to renew my by-words URLs, I would like to build this website into one that can replace the one I set up when I started freelancing in 2007.
My goal of learning more about Drupal 7 is only partially accomplished. Of course with Drupal there’s always more to learn, and I don’t have a plan for how to do this on my own. But it is important because …
My work website is a mess! It was more important for me to work on it when I was actively looking for clients, but with BNA projects and Risk Retention Reporter taking up all my work time over the last couple of years I have not kept it up. The portfolio is lacking, and I never did make the visual presentation work out the way I wanted it to. But I don’t want to put any more time into it – this website offers me a clean slate.
It’s time to envision what I want my web presence to be, whether I stay retired or not. As I know from working with clients, this is not an easy job – and I don’t expect to complete it by the by-words.com renewal date. But I would like to get it done before I have to think again about whether to “go back to work.” April, after the Hopkins trial is over? We’ll see.
*******************
I think three big ones is enough to articulate in one day. We’ll revisit this topic again over time.