More Dread – Heath Insurance Woes

Insurance Plan Change Forces Change Of Doctors

The new year continues its run of good news as I found out that none of the health care options (the ones I can remotely afford anyway) that are available to me under our organization’s new health insurance plans, allow me to continue with the team that has been currently treating my Hepatitis C.

As several of the recent posts have detailed, our organization changed its health insurance broker and plans for the upcoming year. In order to save money (and I can’t really argue with this as the insurance costs for the organization have risen 40% for this year), they subscribed to Blue Cross “Select” and Heathnet “Silver” insurance plans in addition to the standard Kaiser Permanente plans that have been offered for years. While initial and even follow-up research indicated that my doctors were contracted with both Blue Cross and Healthnet the final determination that came through the brokers was that, while they are contracted to both Blue Cross and Healthnet, they are not contracted with the two stripped-down plans that our organization subscribes to. I could subscribe to a PPO that includes my doctors, but the monthly cost would total more that $4,000 per year, plus the $4,800 in yearly drug co-payments, plus very high deductibles on any medical procedures and hospitalizations that might occur and I just can’t afford to pay those kinds of fees on my income here in one of the most expensive cities in America.

On the positive side, I still have health insurance. It will be through Kaiser Permanente and will be funded by my employer. Kaiser does good work and has good doctors. Even the treatment nurse who has been handling my care at California Pacific Medical Center, was hired away by Kaiser and he is top-notch. The only problem is whether I can manage the transfer of my treatment to Kaiser during the relatively small window of time until my prescriptions run out. I have to get a primary care doctor, have him refer me to a hepatologist, have my records transferred and have my meds continued during a time period of about 20 days. I get to find out how much stress and complication I can handle with a Swiss cheese brain and a 30-day supply of anti-depressants. But that’s the modern world we all have to cope with, so the best thing to do is buckle down and dive in, to mix up some metaphors.

There are lots of people in much worse shape than I am. There are folks with the disease and no health insurance who depend on the largesse of drug companies or aid programs. There are people on waiting lists for liver transplants that are watching their window of opportunity close on them. There are people even with health insurance who are paying huge chunks of their income or going into debt to get access to treatment. I am in none of those positions and I appreciate that more than I can say. I would just like to get some good news at the start of the year. Maybe the Giants will trade for a right-handed bat, the Niners will sign a quarterback, or the Warriors will make the play-offs. I can feel my immune system recharging already.

A Creeping Sense of Dread

Holiday Stress Equals Erratic Meds


I’ve been in treatment for 57 weeks and have been negative since the end of September, but I am approaching my upcoming viral load test with a great deal of trepidation. The month since the last test has been very difficult. The holidays were not a happy time for my wife and I as there were job problems, family problems and the general high stress levels that the holidays can bring.

The combination of all the stress with my growing inability to concentrate and remember resulted in my missing 3 afternoon doses of my meds during the 10 day period following Christmas. This makes me very edgy as it was the combination of skipped interferon and lowered Ribavirin doses that led to the viral breakthrough that bounced me out of the RO5024048, RG7128 study last June.

In this case, I did not miss any interferon doses, but I did miss 3 partial doses of Ribavirin in a relatively short period of time. This was effectively similar to the lowered Ribavirin doses of late May before the breakthrough. Ribavirin by itself does not seem to have a strong direct antiviral effect on the Hep C virus, but it does contribute a great deal to continuing to hold the virus in check once the interferon has pounded it into undetectability. Therefore reducing the dose, whether deliberately or through simply forgetting to take the drug, can have a significant negative effect on continuing to be undetectable.

The strange thing is that I cannot remember forgetting to take two of the doses (I realize how silly that sounds given the state of my brain by this point but nonetheless…). I can only remember the sick feeling of getting up the next morning, going to take my meds and finding the closed container labeled Monday p.m. that still contained my previous evenings dose. It was bad enough the first time, but two days later on Thursday, exactly the same thing happened. I thought I had done my duty, got up the next morning and found the container with the dose on the table. I knew that it was serious, that I had to stay on schedule and yet I had forgotten again. The thing that knots your stomach is the knowledge that you have screwed up and you can’t go back and make it right. The opportunity to stay on the schedule is gone and the best you can hope for is that it hasn’t compromised your treatment.

Several days later, I missed the third evening dose. This time I figured out what happened and decided that yet another behavior modification was necessary. I went to take my evening dose, sat down and opened the container with the meds in it and then my cell phone rang. It was someone to whom I rent space in my studio so I took the call. It took a while to figure out the problem and by that time I had forgotten to take the dose. However, since I had specifically gone into the room to TAKE the dose, when I thought about it later that evening, I confabulated the memory of actually taking the meds. Again, the increasingly sick feeling in the morning when I found the open but full container on the table. I decided at that point that I would immediately take my doses the moment I thought of them from that point on and it has worked excellently since then. It doesn’t matter if the phone rings, my wife is talking to me or I have to run to the bathroom; when the thought of my evening dose crosses my mind, I get up right then and go take it.

I cannot stress enough the importance of keeping your dosing schedule (your doctors, nurses and everyone else all stress the same thing, so I know I am preaching to the choir). If you have to put signs all over your home, rubber bands on your wrist or tattoo it to your forehead; do whatever it takes to stay on your schedule and not miss a dose.

I hope it doesn’t screw me up, but it was a bad end to last year and a tough start to this one, so I am looking at this test the same way you look at the door into the dark basement in the horror movie – don’t go down there and don’t split up.

Heprat’s Coverage Is In The Health Insurance Twilight Zone

The following story is sadly not unique to my situation.

The phone call came from the HR director of our organization. He told me that our health insurance broker had called him with the information that my primary care physician (PCP) only had a contract with Anthem Blue Cross (world’s scariest health insurance company) as a specialist, not as a primary care physician. Therefore I would have to find a new PCP. I had been going to my PCP for 12 years through 4 insurance carrier changes. For the entire time he had been affiliated with a physician group that has contracts with every major health insurance company. Something did not smell right about this ruling.

My PCP had written all my referrals to specialists for my Hep C treatment. He had written several of the prescriptions for the drugs to manage my Hep C side effects. If I had to find a new one, the new doctor would have to get up to speed on my condition, reinstitute all my referrals and prescriptions and do it all by the 10th of January when my supply of Ribavirin would start to run out.

Heprat, man of panic and desperation, sprang into action. I called my PCP’s office. They told me in no uncertain terms that they had a PCP contract with Blue Cross as many of their patients had Blue Cross insurance. I went to the Anthem Blue Cross website, searched for PCP physicians within 2 miles of my home and my doctor appeared on their list of Primary Care Physicians. Not only that, but the doctor code for his PCP status was listed and it said that he had an open practice and was currently accepting patients. Armed with this information, I called the insurance broker for our organization. I explained my situation and they repeated that according to the website of the insurance broker they used, my doctor was only contracted as a specialist; they even went online and checked it while we talked. I told them that I was looking at the Blue Cross website and on that site it clearly stated he was a contracted PCP. I reminded them that the broker website they used for their information had been wrong about the Blue Cross drug formulary and wrongly stated that my hepatologist was not a Blue Cross doctor. They grudgingly admitted that the Blue Cross website might be more accurate than their broker website and agreed to resubmit the paperwork with the codes I provided them from Blue Cross. Now we wait on Blue Cross to process the paperwork.

The Ribavirin runs out on the 10th of January. The interferon runs out on the 14th of January. My thyroid medication runs out on the 9th of January. The Celexa runs out on the 17th of January.

I suspect my neighbors think I am either insane or being brutally beaten as I have spent several minutes the past few afternoons walking around the house and screaming. It sounds terrible but it really does help relieve the stress. For all of you out there in this same situation, I recommend screaming. It lets out your feelings and leaves you so damned tired that you don’t have enough energy for an anxiety attack.

The Magic Bullet Theory

Waiting for the “Next Best Thing”


Last Tuesday was the annual Holiday Pot Luck for the twice-monthly Hepatitis C support group that meets in the California Pacific Medical Center Pathology Conference room. There were about two dozen people there and, in the tradition of potluck dinners everywhere, enough food for twice that number. Best of all, there were plenty of desserts.

Of the two dozen people or so people attending, about half were either currently in treatment or had successfully completed treatment; another quarter had undergone treatment and either failed to respond or the virus had reappeared after the completion of treatment and the last quarter had yet to make a decision about treatment. About half the folks who had successfully completed treatment and never had a recurrence of the virus were people with Hepatitis C genotype 2. This genotype has about an 80% chance of clearance, and excellent prospects of a sustained viral response, with 24 weeks of standard interferon and ribavirin treatment.

After people had settled down with their plates of food and glasses of non-alcoholic libations (ginger potions of all sorts were quite popular), everyone reported on their general state of health, how they felt and any significant issues they had that might be caused or intensified by the disease or their treatment status. Several common themes emerged as people told their stories.

The people who had successfully completed treatment reported that by and large they felt they were back to normal functioning (one individual reported that she felt that after 2 years she still did not feel she was back to her previous cognitive function level). They felt their energy had returned, they no longer had shortness of breath, their strength was back and generally they were physically in good condition. Most felt that their mental faculties and their memory had returned to pre-treatment levels as well. To a person, they reported that it took considerably longer to return to full function than the time that is considered standard by the medical establishment. The usually quoted time to recover from the effects of interferon, ribavirin and the other associated drugs used in treatment is 3 to 6 months. Everyone reported that the time it took them to recover from treatment was in the range of 6 months to 1 year with a few reporting longer times than that.

The people currently in treatment (and for that matter, the folks who had completed treatment) reported two side effects as most debilitating: fatigue and brain fog. The fatigue ranged from merely difficult to extreme with no one reporting only mild fatigue. That said, person after person stated that the most irritating and frustrating side effect was the cognitive deficit associated with interferon brain fog. It was not just the increased memory difficulties, it was the inability to concentrate, the ease of distraction, the loss of train of thought that drove everyone crazy. Most folks also reported nausea of varying degrees, insomnia, sweats etc.; but those paled in comparison to the frustration of brain fog and the annoyance of being tired all the time.

The rest of the people at the meeting, the non-responders to treatment and the people yet to attempt treatment, all had the same outlook: they were waiting for the new and better drugs to become available. They had very different reasons for this viewpoint, but it was surprising to see the uniformity of their point of view.

The non-responders and fail-to-sustainers had all failed at the standard interferon and ribavirin treatment. They and their doctors had come to the conclusion that the two drug standard treatment was not going to successfully defeat the virus in their bodies. They need the additional punch of one of the new drugs in order to have a real chance at success. You can’t argue with that conclusion, when what is available has failed, you have to await further developments to move forward.

The people who had not done any treatment had different reasons for waiting for the next new and better drugs. Many were afraid of the side effects but most were looking for a therapy with a better chance of success that the standard therapy. The standard treatment has about an 80% chance of clearing genotype 2 Hepatitis C. It has a 40-45% chance to clear genotype 1 Hepatitis C. The drug most likely to be approved next is Telaprevir, a protease inhibitor (Boceprevir, a similar protease inhibitor is supposedly not far behind). Telaprevir has demonstrated in research testing that, in combination with interferon and ribavirin, it has a genotype 1 clearance rate of about 60-65% (Boceprevir has similar test results). On the surface the reasons for waiting for the new drugs are clear-cut, 60% is a much better chance than 40%. There are a lot of other factors to consider before pinning one’s hopes on the next best thing, however.

First is the discovery of variations in the IL28B gene and how these variations affect response to treatment. If you have the CC variant of the gene, the evidence indicates that your chances of responding well to standard treatment rise to the 60% level, or about the same as the telaprevir response rates. The test to determine which variant you have is available, not extremely expensive and clearly gives information you can use to make a decision about treatment. For a more info the link is here.

Secondly, the new drugs are not assured of either approval or timeliness. The latest Telaprevir application was submitted to the FDA in November, 2010 which means a decision is 6 to 10 months away. Boceprevir has not even reached the “it’s coming in the next x months stage of rumor yet.” There is also the, admittedly small, chance that Telaprevir is never approved. I have many friends who are in the gene-splicing and drug development fields who report a number of instances when companies were extremely confident of FDA approval only to be turned down during the final application. The FDA might come back with concerns that require further testing or additional data submissions, all of which could move the timeline much further out. The promising new polymerase inhibitors (RG7128 and RO5024048 for example) are only just beginning phase II trials which means they are at least 3-5 years away from any sort of approval and only if they succeed in further trials. There are other drugs even further away, etc.

Thirdly, these new drugs are expensive. They project to be about twice as expensive as the current interferon and ribavirin. The plan is that you only need 24 weeks of treatment, but it will be a very expensive 24 weeks. Therefore the question of once the drugs are approved how long it will take for them to be added to insurance company drug formularies so they will be covered by your insurance becomes extremely important. As we all know, insurance companies can be quite recalcitrant about approving new therapies.

Finally, there are all the considerations about your personal situation. What stage is your liver disease? What is your viral load? What is your general health? How old are you? These questions only start to list your issues. What is your financial situation? What is your insurance coverage? What is your work situation? Do you have solid family support? If you have to go on disability, how would that affect your job future? Can you even tell your employer, family, friends and coworkers that you have the disease? All of these and more are considerations that may be more important than the rates of viral response of the various drugs.

Remember two things as think about all the ramifications of when and how to deal with your Hepatitis C: first, there is always a newer, shinier, more promising therapy in the future and second, the best is the enemy of the good.

Ode to California Pacific Medical Center Hepatology Center

Today was my bi-weekly blood test. It was a quick and dirty one-tube wonder that measured the standard blood chemistry, hemogloblin, neutrophils, white and red cell counts, etc. It was a screening day for folks who were applying to be in one of the upcoming drug trials, so there was a bit of a wait at the Hepatology Center lab. They have a TV in the waiting room playing nature DVDs on a continuous loop with the sound turned way down. Anyone who has read much of this blog knows how much I like watching concentration free video, so it was not a burden to sit in a comfortable chair and wait my turn.

While waiting my managing nurse from the Roche drug trial (RO5024048 or RG7128 depending on which company you favor) AVB saw me and stopped by to chat me up. Actually she just sat down to ask how I was doing but we older guys can always dream. We talked for a bit and she asked if I was still on treatment, how much longer it was to last, if I was negative, whether I was still working and how I was coping in general. (I asked about her mother and she told me that she was fine, but probably needed to have somebody to talk to outside her family).

I gave her the lowdown on how I was doing – still on treatment, 54 weeks in 24 to go, I have been negative for 12 weeks now, I am still working 4 days a week and aside from feeling very tired all the time and stupid some of the time I felt I was doing okay. Like many people with experience in either undergoing or administering Hepatitis C treatment, she was surprised I am still working. She urged me to make sure that working was not taking too much out of me. She emphasized that if work wore me out too much, it could inhibit my ability to succeed at treatment and that I have to remember to think of my own health first. She reiterated something that she told me several times when I was in the experimental trial, that they would write the papers for a disability claim for me whenever I felt it was necessary. We talked briefly about our holiday plans; she patted my knee (see what I meant about chatting me up…) and went about her business.

I mention that meeting because it is characteristic of the vast majority of interactions I have had with the staff of the CPMC Hepatology Center. From the folks at the front desk to the people who draw blood, to the nurses, technicians and the doctors themselves, they all exhibit genuine concern and care for their patients. I am a relatively relaxed patient in most circumstances, but I have seen them show tremendous patience with difficult, disturbed, confused and unresponsive patients. They are gentle with the physically challenged, explain in great detail the nature of diseases and care, are helpful with the people for whom English is not a first language and generally kind and concerned with those under their treatment.

When they are dealing with me personally, I never feel that they are rushing me through our appointments. They answer my questions (and in fact are more than willing to grill me about how I am reacting and whether previously reported symptoms are still present) and explain medications and procedures until they are sure I understand what is going on. My nurse Alex (who, sadly, is leaving for a better paying job with another health organization) goes so far as to leave messages on all my various phones and then insists I call him back to make sure that his information has gotten to me. Dr. Bzowej has first-rate knowledge of the field and has a warm manner that is a great comfort during a trying time.

There are folks I know (a few in the local Hep C support group) who have not had experiences as positive as mine at CPMC. My wife claims that some of my experience is because I am a good person and that difficult people tend to have difficult experiences but she is not exactly unbiased in her analysis. Nonetheless, I have to say that the CPMC Hepatology Center and the people who staff it have been great to me and a huge reservoir of support for the past year. Let’s hope they only have to play that role for me until next May and that they never have to treat me again after that.

Another Day Another Insurance Functionary

It is amazing how exhausting phone conversations with health insurance bureaucrats can be. After composing and sending several emails, I hit the phones to try for more direct answers concerning the details of the potential coverages available to me. I talked to a number of folks who ran the gamut from clueless, bewildered, helpful but clueless, helpful but wrong and helpful and possibly correct. The problem is that determining the difference between the final two types, helpful but wrong and helpful but possible correct is neither easy nor readily apparent.

After sending a set of detailed questions to my HR department, they punted me further on to the insurance broker who handles our account. They were nice folks and quite helpful, but the insurance plan drug formulary comparison tool on their website indicated that Neupogen and Ribavirin were not in either the Blue Cross or the Healthnet formularies. I found that a bit hard to believe as both are large health care providers and must have more than a few Hep C patients. I managed to track down the pdf file of the actual Blue Cross formulary updated as of November, 2010 and all the drugs I am taking are in their formulary. Naturally, this does not raise one’s confidence level about the quality of the answers to the other questions I asked.

The two other questions I asked were about the drug copays for specialty drugs and any special tasks I needed to complete to insure continuity of care. The drug co-payment information they provided was straight out of the handbook and concerned the difference in co-payments between generic and brand name drugs, it did not address the specialty drug question. It may not even be an issue, but, again, it’s all up in the air until the actual paperwork goes through.

As far as continuity of care: heck, not a problem. Just let everyone know as soon as possible that the change in plans is occurring, get them to write new prescriptions for everything you take, get authorizations from the insurance company for all of them and have it all happen before any of the current scrips run out. Oh, and have it all happen during the highly productive holiday season.

If only they could switch the open enrollment period to some other time of the year...Ho! Ho! Ho!

The Joy of American Health Insurance

Two days ago the employees in my organization entered our annual health insurance open-enrollment season. While this has always been a pain in the butt process, it assumes greater importance given my current situation. Considering that I have 22 weeks left to complete my course of Hepatits C treatment, continuity of care becomes an issue of primary importance.

I currently have Blue Shield insurance. I enrolled in Blue Shield when my organization’s health care broker dropped my previous insurance company. This year, they have dropped Blue Shield from their list of available plans. They have substituted Anthem Blue Cross, one of the more notorious insurance companies in the country and Healthnet, one of the most expensive. Just the sort of additional stress one looks forward to at this most wonderful time of the year.

I am currently enrolled in an HMO under the Blue Shield umbrella. This is not an HMO in the traditional sense of Kaiser Permanente or Group Health; that is a company that owns it’s own medical facilities. Instead Blue Shield contracts with physician groups and hospitals that provide the same services as a HMO. My physician group is associated with both Blue Shield, Healthnet and Blue Cross, so I should – emphasis should – be able to transfer my care over to one of the other umbrella payment plans without a great deal of difficulty. Even if that is the case, however, there is no guarantee of consistency in the drugs each organization has in their drug formularies and particularly in the amount of co-payment they charge for the more exotic drugs necessary for treatment: Pegasys (interferon), Neupogen, Procrit and Ribavirin. Currently my co-payments for these bad boys run about $315.00 per month. Will the number go up, down, sideways? Inquiring minds want to know.

I have begun my research, of course. I have a series of questions in to my HR department, such as it is; I have called my specialty pharmacy to initiate inquiries as to their knowledge of co-payment differences; I have talked to my doctors about the necessary paperwork I will have to produce to ensure that I will have uninterrupted care. Oh yes, I have ten days to make my decision.

Would that our country was a sane one and health care was viewed as both a necessity and something citizens could expect from the taxes they pay. Thank heaven I at least have an employer that provides health insurance plans or I might be living in a box right now – the actual retail cost billed to the insurance company for the drugs I take on a monthly basis is just over $7,000, quite a bit more that I make in pay.

Soon enough information will come pouring in and decisions will be made, I can hardly wait for the conversations with insurance functionaries, Joy To The World, eh?