Health Care versus Health Insurance

When last I wrote, I was just about to institute a change from the good people at California Pacific Medical Center (CPMC) through Blue Shield insurance to the Kaiser Permanente Health Maintenance Organization. Our organization changed its insurance policies and the only affordable option was to go with the Kaiser HMO. From my first appointment with my new Primary Care Physician (PCP) it was clear that Kaiser’s approach is very different from standard insurance. It is the difference between a Health Care Organization and a Health Insurance Organization.

I made an appointment to see my new PCP - which appointment I was able to get for only two days after I called. I picked my new doctor from a roster of available doctors because she had been working in the Chinese community on some Hepatitis B projects and thus was already familiar with Hepatitis cases. When I went in to see my PCP, I brought along my lab reports and health summary updates from my doctors at CPMC. I gave her my data and she began asking questions and typing lots of information into my medical record via the computer in the examining room. My biggest single concern was making sure that my meds, which were running low, would be able to be continued and that I would not miss doses in my treatment regimen. She started entering in my various medication and doses, checking instantly to see if the same drugs were available and in stock at the pharmacy. On her own authority she was able to prescribe all my meds and send the prescriptions through to the pharmacy via computer. This included pegasys and ribavirin as well as the thyroid medicine, the antidepressant and the sleep aids. You could have knocked me over with a feather. She then forwarded my records over to the gastrointestinal department and told me that someone would be calling me that afternoon to go over my information and set up an appointment. She also made instant referrals to the psych department to set up a neuropsych evaluation as per Dr. Bzowej’s recommendation and to some various other departments to handle some other health issues unrelated to the Hep C. This all happened in a 40 minute appointment in which, despite her working at top speed – especially in data entry, never felt rushed. She then gave me her card with email and phone contact info and told me to call her with any further questions. I walked out of the appointment in shock.

Compare that to what Blue Cross (or Blue Shield, Healthnet, Aetna – I’ve had them all over the years) would have done. I would have seen my PCP. They would have had to write a referral to a Hepatologist. The referral would have to have been approved. I would have seen the Hepatologist. That doctor would have had to prescribe the meds I need for treatment. The prescriptions would have had to be approved by the insurance company. I would have had to go through a specialty pharmacy to get the meds. I have no idea how long that might have taken even if there was an attempt to expedite the process due to my ongoing condition.

It is all due to the difference in business model that each type of organization has. Kaiser’s model is that I pay a monthly fee for my health care. They make money (they are a non-profit corporation, but they need to at least break even for all this to work) through efficiency and by rationing care. If you are seriously ill they are on the job, if you have a sore throat you had better have had it for a long time before they are going to set you up with a doctor’s appointment. The whole implementation of computerized records and paperless referrals means that they save beaucoup bucks in paperwork costs. They also are proactive with immunizations and diagnostic tests because they are aware that early detection of disease means that treatment is easier and cheaper. They have their problems to be sure, but they offer good care.

The insurance company model is that you pay a monthly fee for insurance against illness. They make money by limiting your care. They do this by making referrals and authorizations for treatment difficult to get. They also are very careful in how much they pay to doctors and hospitals for treatment and frequently deny payment or portions of payment for treatment. They are less likely to emphasize preventive care because that costs money out of pocket and you might never get that particular illness while insured by them. On the other had they offer considerably more flexibility in whom you can see and where you can see them for care.

Going forward will be an interesting journey, but the first experience has been very good and at least I was able to continue uninterrupted treatment.

P.S. The gastroenterologist really did call me back that afternoon and he set up an appointment for only three days later…

Back on the Interferon Bandwagon

After a reduced dose of Pegasys two weeks ago and a skipped dose last week, I am back under the hammer, so to speak. The dose reduction was due to my neutrophils being below 500. The study doctors believed my neutrophils would rebound without the interferon pounding down the white blood cells. They were right. The number popped up to 1250 and they put me back on a half dose of Pegasys.

It is amazing how much you can forget in 20 days. While I had a lot going on the past few weeks what with the acclimatization side effects of the antidepressants and the new drugs I was taking because of it, nonetheless the number of interferon related physical symptoms that disappeared without my noting their passing surprises me.

I injected Thursday evening and that night I had night sweats and had to change my t-shirt twice. By Friday late morning/early afternoon I had the mild headache and general crappy feeling in the head that you feel when you are coming down with something. By 5:00 p.m. my muscles started to ache, especially in the butt area (How can you mindlessly watch TV while feeling crappy and sore if you butt is aching?). That night I had a generally stuffy head and by Saturday morning the middle of my back was stiff and cramping. I had my first wave of nausea around noon and I also had a sore spot in my breast but with my general clumsiness of late, it could easily be the result of my running into a door, or wall, or chair, you get the idea.

All of these symptoms had disappeared over the past 20 days. Their disappearance was accompanied by completely forgetting about them. I didn’t really even register the fact that I hadn’t felt nauseous in almost three weeks. That would seem to be the sort of thing that you might take note of.

I think this points up the importance of keeping notes about your general health, side effects and mental state throughout your treatment. It doesn’t have to be elaborate. Just a small notebook wherein you note how you are feeling generally and any unusual or unique effects you are feeling. It really helps to be able to flip through you notes and realize that a particular symptom or side effect or your general state of health and feeling is something that you have experienced before. The interferon really affects your concentration and memory and it is very easy to completely forget about something earlier in the treatment cycle that seemed it would be unforgettable at the time. So make notes and keep records. A little notebook of the history of your treatment can be a great friend to you when something seems to be coming out of nowhere, but actually happened to you in the past.

Second Opinions

I visited my gastroenterologist, the fabulous Doctor C, to keep him up to date on the progress of my treatment. I took him all my latest lab results, the two prescriptions the research doctors have given me to treat my pain and insomnia and the questions I had been accumulating about what I have been going through.

Doctor C is a great listener and takes as much time as needed to deal with his patients’ questions and problems. He went over my file and the latest test results I brought with me. He had a number of questions about the physical side effects of treatment. He asked about the nature and severity of them as well as any measures that were being taken to either counteract or mitigate their effects. I also asked him for his opinion of the drugs they had given me for the muscle pain (tramadol) and for insomnia (trazadone). He immediately pulled up his drug reference app on his smartphone and gave me the details. He told me that the tramadol was fairly standard for the pain. He went into more detail about the trazadone. He told me it was an antidepressant that had been around for over 20 years and that it was a very safe drug. He said that it had also demonstrated good results as a sedative. He told me that as an antidepressant the dose went up to 300 mg. and that as a sedative the dose was either 50 or 100 mg. I was prescribed one 50 mg tablet as needed. He told me that if it was not working at that dose to take two. It was perfectly okay and would probably be very effective.

He also questioned me quite extensively about my state of mind. He is very concerned about the side effects of interferon. He has had extensive experience in prescribing it for various conditions and has seen that it can be devastating to some patient’s mental state. He mentioned that his father had taken it for a lung condition and had become extremely depressed. He was a bit surprised that I was not on any antidepressants. He mentioned that when he prescribed the standard therapy for Hep C for his own patients he usually started a prophylactic regime of antidepressants right at the start. He suggested that I pay close attention to my mental state and that I should keep both the study doctors and him informed of any changes.

It was a good meeting and I think it shows the importance of having someone you trust on your team going into treatment, whether it be a research trial or the standard of care.
The books and advice sites all say that you should have a hepatologist as well as your primary care or personal physician in your medical team. I am not sure it is absolutely essential that you have a hepatologist. Doctor C is a gastroenterologist who has extensive experience with Hep C. As a hepatologist is a sub-specialty of gastroenterology, an experienced gastro person should be familiar with Hep C. If not, look around until you find one if you can.

You need to have a doctor who listens to you. That is the most important characteristic you need to find. You need to find the best mix of attention and knowledge in your doctor. This is especially true for a research trial. The research trial doctors are very good and want their patients to succeed, but I have never talked to a trial doctor for more than four or five minutes. The conversations are about specific reactions and not about the general state of my health, my state of mind or my progression of symptoms. Thus, you need to have a doctor outside the trial to backstop the questions, the decisions and the information you are getting in the trial. You need someone who is on your side.

Unless you don’t have a choice, and unfortunately there are lots of people in that situation, don’t go into a research trial unless you have a personal or primary care doctor who knows exactly what you are planning to do and what to watch for because of it. If you can, get a referral to a gastro person with Hep C experience or a hepatologist before the trial. You can give them the details of the trial, they can get your history and you can forward your results to them as you receive them. This way you can get the support you need when you have questions and concerns that may not be met by the study doctors.

Never be afraid to ask for a second opinion. It is your right as a patient. Get all the information you need to feel comfortable proceeding with your treatment be it drug trial or standard of care. You are the only person who has only your best interests at heart, so do whatever you need to defend those interests.

Week 18 – On A More Personal Note…

Yesterday I passed on the news about the expansion of the RO5024048 combination drug trial. Today I’ll pass on the personal news about my condition.

They did all the usual blood draws (only 14 vials this time), and various vitals but no EKG. I didn’t notice that they were not doing it and therefore never asked why it did not happen. When they checked my weight, it turned out I have lost 12 pounds in the last 8 weeks. I had noticed my belt being a bit loose, but I didn’t think I had lost that much weight. I don’t have the energy to exercise heavily so I guess I am eating less than I think.

I’m still undetectable as of week 14 (which was 4 weeks ago) which is the best news of the day. 8 official weeks of no detectable virus levels is encouraging and definitely helps during the various bouts of side effects. About 3 weeks ago they dropped my Copegus dose to 1000mg from 1200mg per day. My Hemoglobin has popped up very slightly but I am still down 35% over normal. The only new development with the shortness of breath associated with the anemia is that now I occasional get out of breath while talking. Thankfully it only tends to happen when I have to project a bit to be heard in a noisy room or in a large group, the usual day-to-day nattering is unaffected (to the occasional chagrin of those subjected to it). White blood cells are low but just above the cutoff line.

About 3 weeks ago, my neutrophil count increased enough that they restored me to a full dose (180mg) of Pegasys from the 3/4 dose (135 mg) that I had been on for about 6 weeks. This brought back a whole raft of side effects that had moderated during the lower dose of interferon. Headaches, rash with itching (thankfully mild), nausea and more intense insomnia all were once again daily, or at least several times weekly, features of life. I had actually thought that my body had begun to acclimate to the treatment drugs, but with the return of all of these side effects, I believe the lower occurrence was due to the lower dose.

I have been having bouts of insomnia for several weeks and given that they have increased with the increase in my interferon dose, the consulting doctor to the study decided to proscribe trazodone to help me sleep. I have taken it twice and while on the first night it did not seem to help at all, the second night found it working better and I think I got a decent night’s sleep. I will report back on the results in the future.

As for reports, taking acetaminophen instead of ibuprofen, just before my Pegasys (interferon) injection has had no effect on my fatigue in the 24-36 hours after the injection. I feel just as crappy taking Tylenol as I do taking Motrin, so much for the miracles of modern pharmacology.

Time to head out the door to the support group. Best of all, I can listen to the Giants game on the way there and maybe on the way back…if I don’t forget they’re playing before I get to the car.

Suddenly Being Sleepy

A new version of an old side effect surfaced during my recent stay in Los Angeles. Fatigue is one of the more common side effects of Hep C Treatment and I have been experiencing it in mild and severe forms since beginning the treatment study. It has generally built up during the day and peaked in the afternoon at which time I have to lay down and take a nap or I have a hard time functioning mentally or physically. What I noticed over the weekend was that the fatigue started to come on very suddenly. One moment I was functioning more or less normally with my usual moderate level of energy and attention. Over just a few minutes I would be yawning uncontrollably and have a strong need to sit down or lie down. I just didn’t have the energy to sit up and pay attention much less walk around and function normally. This could happen in the early afternoon, mid afternoon or late afternoon and did not seem to directly relate to the intensity of the activity that had been occurring.

This is not something that has been occurring up to now and presents a new challenge for managing the treatment and the side effects. It is going to be a bit more difficult to plan activities if I do not know when I am going to become tired or how suddenly the fatigue will be coming on. This is not a welcome development, to say the least, and I am not sure what it is related to.

I recently resumed injecting a full dose of interferon. Since that time, I have noticed the return of two symptoms that occurred earlier in the study but had since disappeared. I have a mild rash on various parts of my body, mostly the arms and legs, which itches. The itching is not severe and I can usually ignore it. I also have headaches that I tend to feel mostly behind the eyes. I had both of these symptoms in the first several weeks of the study and I had thought that their gradual disappearance was my body acclimating to the interferon and ribavirin. About 6 weeks into the study my neutrophil count and lymphocyte count had dropped to the point that my dose of interferon was reduced to 135 mcg. from 185 mcg. It occurs to me now, that the disappearance of those symptoms corresponded to the reduction in dosage and perhaps that was the reason for the disappearance as opposed to becoming acclimated to the drugs. If so, now that I am back on a full dose I my have a more complete menu of side effects to look forward to for the duration of the treatment.

It also makes me wonder if the new, more sudden, onset of fatigue is related to the increased interferon dose. Since fatigue is a known side effect of the drug, and the longer you take interferon, the more you feel the side effects, perhaps this is also caused by the return to a full dose of interferon.

I am also going to start taking more acetaminophen (Tylenol) with the interferon. I had been told by a lot of people that taking acetaminophen before injecting helped relieve the pain associated with the injection site and generally in the limb that you injected. I usually take ibuprophen instead as I have never experienced much of a pain relief effect from acetaminophen. In doing further reading, it has been reported that taking acetaminophen at the time of the injection can help relieve the fatigue associated with interferon, especially the fatigue that occurs 24-36 hours after the injection. I will definitely try it with my injection this Thursday and report my results. I hope it works; I am definitely tired of being sleepy, especially on short notice.