tag:blogger.com,1999:blog-57529171552895391802024-03-05T23:25:49.854-08:00hepratI am a 57-year-old white American male infected with Hepatitis C. I am involved in a controlled medical research study by Roche Pharmaceuticals of an experimental Polymerase Inhibitor (RO5024048 also known as RG7128) drug therapy for the virus. This document is the story of my illness and the experience of treatment. My lovely and pretty damn wonderful wife will be contributing her take on the experience as well.heprathttp://www.blogger.com/profile/07995268856694252260noreply@blogger.comBlogger140125tag:blogger.com,1999:blog-5752917155289539180.post-21235538218710061562015-06-02T19:56:00.000-07:002015-06-02T19:56:34.803-07:00Viral Load Results - 1 Month InThe treatment is being done through Kaiser Permanente and Kaiser tests for viral load on a monthly basis. They tested at the beginning of treatment and, now that the one month date has passed, they tested again to see if the treatment is having the desired effect.<br />
My viral load at the beginning of treatment was 3,550,000 IU (international units) per milliliter of blood. This is considered a high viral load. Not as high as the first time I went through treatment when it was 15,000,000, but still high. High viral load (anything over 800,0000) was considered to be somewhat more difficult to treat under the old regimen.<br />
After one month of treatment, the test came back at 25 IU per milliliter. That is more than a <u>LOG 5</u> drop in viral load which is an excellent response to treatment. Here is a post about <a href="http://heprat.blogspot.com/2010/07/viral-load-and-log-numbers.html">what Log numbers mean </a>regarding viral load.<br />
In Hep C treatment, any number under 50 IU per ML is considered to be a Sustain Viral Response or SVR which means you are cleared of the virus. In the case of Harvoni treatment, this level of response has to be repeated at the two month test and the 3 month test to be considered successful.<br />
Finally, in order to be considered to be cleared (or in remission) this same low level must be repeated in a test 6 months after treatment is finished. If you are below 50 IU per ML six months later you are considered to be, according to the doctors, in remission. The drug manufacturers, of course, say you are cured.<br />
So, the viral load is currently below the threshold for an SVR which is great news. If this continues for the next two months it will be even better. It certainly makes the headaches and gas easier to deal with.heprathttp://www.blogger.com/profile/07995268856694252260noreply@blogger.com1tag:blogger.com,1999:blog-5752917155289539180.post-48004111980474666092015-05-21T17:24:00.001-07:002015-05-21T17:24:10.450-07:00Harvoni - The Side EffectsIt truly is a new day in Hep C treatment. The effects of using Harvoni are a far cry from the often brutal effects of the old Interferon/Ribavirin standard treatment. Fatigue, Insomnia, Brain Fog, Night Sweats, Irritation/Anger, Restless Leg Syndrome, Hair Loss, Depression, Memory Loss, etc. etc. etc. I believe there were some 60+ posts under the tag "Hep C treatment side effects" during the time I was on the old chemotherapy. This time around the side effects are much fewer and more easily managed.<br />
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I have noticed a persistent low-grade headache; some abdominal effects notably diarrhea and bouts of truly astonishing amounts of gas production; a bit of nausea occasionally and finally, quite contrary to the advertised fatigue, a bit of a speedy effect, especially if any caffeinated beverages are consumed. The headache is manageable through over the counter meds, the gas is manageable by removing myself from the company of others and enduring the effects alone and the energy boost can be useful though it is accompanied by enough loss of focus that it is best avoided.<br />
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It will be interesting to keep track of how the side effects evolve over time. So far, the nausea has decreased a lot, the headache has slowly been increasing and the speed effects are something I am trying to keep away from. My primary hope in the long term, is that killing off the virus will help with the brain fog and other long term memory and cognitive deficits of Hep C. Until then I can just keep on wearing the wrist band with my name on it...heprathttp://www.blogger.com/profile/07995268856694252260noreply@blogger.com31tag:blogger.com,1999:blog-5752917155289539180.post-91442535977375543422015-05-08T21:53:00.000-07:002015-05-08T21:53:26.852-07:00The High Cost of Harvoni; Luck was on My SideWhen Gilead first announced that they were going to charge $84,000 for a twelve week course of treatment of <a href="http://harvoni.com/discover-harvoni/about-harvoni?gclid=CjwKEAjwvbGqBRCs3eH4o5C74CYSJAB3TODsVGmULXoSV_8zxxe8TV0wajk1C2USA3EwvfD7cWp0NxoCiMzw_wcB">Harvoni</a> in the USA, <a href="http://www.techtimes.com/articles/17690/20141011/fda-approves-gileads-harvoni-drug-can-we-afford-the-1125-once-a-day-hepatitis-c-pill.htm">it caused quite an uproar.</a> It was shown to have a 90+% cure rate and relatively low side effects so, of course, huge numbers of people with Hep C were going to want to be treated. But at that price, the highest price they charged for the drug anywhere in the world, most people felt they were gouging the sick (and their insurance companies). Gilead trotted out all the usual arguments about the cost of developing the drug, the need for the drug (or any drug) to be profitable in order for them to have a reason to manufacture it and the fact that many countries capped the price they were able to charge, but people in the Hep C community in the USA mostly felt that the price was unreasonably high. After all, if you only treat 100,000 of the conservatively estimated 5,000,000 people with Hep C in the USA at $84,000 per treatment, you rack up $8,400,000,000 in gross sales. That seems be a number that, along with sales in the rest of the world, is going to be giving Gilead a fairly massive profit.<br />
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Aside from the sheer cost of the drug to health care providers, the hammer really falls on the people actually infected with Hep C. If you don't have insurance, you are basically screwed. If you have one of the <a href="http://healthinsurance.about.com/od/reform/a/Bronze-Silver-Gold-and-Platinum-understanding-The-Metal-tier-System.htm?utm_term=bronze%20level%20health%20insurance&utm_content=p1-main-1-title&utm_medium=sem&utm_source=google&utm_campaign=adid-48741be4-bcb0-4eb2-bd53-f3dc71cf8527-0-ab_gsb_ocode-5947&ad=semD&an=google_s&am=broad&q=bronze%20level%20health%20insurance&dqi=&o=5947&l=sem&qsrc=999&askid=48741be4-bcb0-4eb2-bd53-f3dc71cf8527-0-ab_gsb">bronze level plans </a>of the Affordable Care Act with a 40% effective co-payment you would have to pay $33,600 for treatment. A <a href="http://healthinsurance.about.com/od/reform/a/Bronze-Silver-Gold-and-Platinum-understanding-The-Metal-tier-System.htm?utm_term=bronze%20level%20health%20insurance&utm_content=p1-main-1-title&utm_medium=sem&utm_source=google&utm_campaign=adid-48741be4-bcb0-4eb2-bd53-f3dc71cf8527-0-ab_gsb_ocode-5947&ad=semD&an=google_s&am=broad&q=bronze%20level%20health%20insurance&dqi=&o=5947&l=sem&qsrc=999&askid=48741be4-bcb0-4eb2-bd53-f3dc71cf8527-0-ab_gsb">silver level plan</a> would leave you with a $25,200 cost and even a <a href="http://healthinsurance.about.com/od/reform/a/Bronze-Silver-Gold-and-Platinum-understanding-The-Metal-tier-System.htm?utm_term=bronze%20level%20health%20insurance&utm_content=p1-main-1-title&utm_medium=sem&utm_source=google&utm_campaign=adid-48741be4-bcb0-4eb2-bd53-f3dc71cf8527-0-ab_gsb_ocode-5947&ad=semD&an=google_s&am=broad&q=bronze%20level%20health%20insurance&dqi=&o=5947&l=sem&qsrc=999&askid=48741be4-bcb0-4eb2-bd53-f3dc71cf8527-0-ab_gsb">gold level plan </a>would still run you a bit over $16,000 out of pocket to be cured of Hep C. For those of us in the fast disappearing middle class in the USA, these are fairly staggering amounts. Sure there are various subsidies and cost breaks available, but given the way they are structured, if you make an amount of money that puts you in the middle class, you are often ineligible for help. I could get into a long rant here about how the Affordable Care Act is really only an affordable insurance act and the cost of any serious health care is just as out of reach under Obama's sellout to the insurance industry as it was in the days before the law was passed, but I will spare you that diatribe. Suffice it to say that the combination of Gilead's predatory pricing and Obamacare's mostly high patient payments means that a large number of Hep C sufferer's are shut out of access to the latest and best treatments available.<br />
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Earlier this year, Gilead announced that it will be cutting the cost of Harvoni by 46% sometime this year. This is because AbbVie has introduced their own interferon-free treatment <a href="http://www.drugs.com/viekira-pak.html">Viekira Pak</a> (which is priced similarly to Harvoni). While this competition is a good thing, the fact that the AbbVie product requires 4-6 pills a day and has more side effects than the single pill Harvoni might mean that it does not provide an effective competitor. If the competition is effective and does induce a lower cost for Harvoni, it means that treatment under a bronze plan would cost about $18,000; a silver would be $13,000 and a gold plan would drop to just over $8,000. While much better for patients, these are still large numbers. Numbers that would have put the treatment out of reach for someone like me.<br />
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I got lucky. I have health insurance through my employer and the roll-out for Obamacare has been complex enough that many employers have been granted waivers the past few years allowing them to keep their former plans in place until the regulations for employer-paid Obamacare plans have been worked out. My employer was granted that kind of waiver. I am insured by Kaiser Permanente in San Francisco and my plan is one that has a $30 co-pay for prescription drugs. I have been closely watching the Kaiser drug formulary (the list of which drugs Kaiser provides through their plan) to see when and if Harvoni was added. As soon as it was, I contacted my gastroenterologist to try to initiate treatment. Luckily for me, Kaiser has an extremely proactive view toward Hep C treatment. They believe that everyone who wants to receive treatment should have access. They seem to understand that, regardless of the high cost of the medication, it is cheaper to treat than to deny treatment and then have to pay the higher costs of late stage Hep C and/or cirrhosis treatment. Many insurers are not as forward thinking. Kaiser did initially prioritize the Harvoni treatment to the sickest patients but as that cohort moved through treatment, they rapidly expanded care to their other Hep C patients.<br />
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When I saw my gastro guy, I explained that I currently had a health plan that made treatment affordable, but that our current plan would be most likely transitioning to the less affordable Obamacare varieties by the end of the year and thus I would like to be treated as soon as possible. He told me stories of a number of his patients on the lesser insurance plans who indeed were currently shut out of treatment. This factor meant that while my liver is not in a particularly bad state, he agreed that the issue of affordability was one that qualified me for moving up the queue for treatment. He set up the necessary tests and within a month, I began treatment.<br />
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I feel extremely lucky that the new drugs came out when they did, that Kaiser moved relatively quickly to include them in their formulary and that they have a very proactive institutional policy toward treatment. If any of these factors had taken another 6 months to work out, most likely I would be like many other Hep C sufferers on the outside of treatment looking in.heprathttp://www.blogger.com/profile/07995268856694252260noreply@blogger.com5tag:blogger.com,1999:blog-5752917155289539180.post-2049436827367999442015-05-07T23:32:00.001-07:002015-05-07T23:32:18.744-07:00New Drugs, New Hope; I start treatment with HarvoniI just started treatment with the new Gilead drug <a href="http://en.wikipedia.org/wiki/Ledipasvir/sofosbuvir">Harvoni.</a> It is the first of the new set of "wonder drugs" for <a href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMHT0022399/">Hep C</a> that do not require either <a href="http://www.webmd.com/drugs/2/drug-37/interferon-alfa-2b-inj/details">interferon</a> or <a href="http://www.drugs.com/pro/ribavirin.html">Ribavirin</a> to be taken along with the primary treatment drug. The drug itself is a combination of <a href="http://www.drugs.com/cdi/sofosbuvir.html">Sofosbuvir</a>, a polymerase inhibitor (much like the one I took in the drug trial described in the early posts of this blog) and <a href="https://en.wikipedia.org/wiki/Ledipasvir">Ledipasvir</a>, which is an <a href="https://en.wikipedia.org/wiki/NS5A">NS5A </a>inhibitor. NS5A is a protein is an essential component for the replication of the Hep C virus. The two compounds act together to inhibit the Hep C virus from replicating itself and thus keep the infection from spreading and allow the immune system to gradually kill off the virus present in the body (my interpretation and if wrong the blame is on me).<br />
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The cure rates for genotype 1 Hep C (most common and vicious form) are in the 94%-99% range for treatment naive patients (those who have never undergone any sort of treatment) and in the 90% range for those of us who underwent treatment in the past and failed (thus leaving behind tougher versions of the virus). The <a href="http://www.drugs.com/sfx/harvoni-side-effects.html">side effects</a> are also MUCH less difficult than those of the old standard of care of interferon and Ribavirin. The most common are headache, fatigue, diarrhea, nausea and insomnia. While these sound bad, and they are no fun, most reports have them present at levels significantly lower than the same side effects on the old standard treatment.<br />
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All of this sounds pretty good. High cure rates and moderate side effects are a strong combination. This is no doubt why you are seeing numbers of soft-sell, perhaps it's time to do something about your Hepatitis C, sorts of <a href="http://www.ispot.tv/ad/786d/harvoni-i-am-ready">ads on television</a> and in print media. Now that there is a treatment without injections, taking only one pill per day, with moderate side effects and with a treatment length of only 12 weeks (and in some instances 8 weeks) it is time for the drug companies to pile on the advertising. That and the fact that Gilead is charging $84,000 ($1000 per pill) for a 12 week course of treatment. (AbbVie has a 4 pill treatment on the market as well: Viekira Pak). The fact that the price is $1000 per pill for the Harvoni may account for the fact that the pill is in the shape of a diamond.<br />
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It's a bit too early to have much to say about the side effects, but taking a pill that cost $1,000 is definitely a new experience for me. I'll have more news about how it feels in the next few days. <br />
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<span style="background-color: white; font-family: FrutigerLTW01-55Roman, Helvetica, Arial, sans-serif; font-size: 14px; line-height: 17px;"> </span>heprathttp://www.blogger.com/profile/07995268856694252260noreply@blogger.com1tag:blogger.com,1999:blog-5752917155289539180.post-33733051027013046192012-09-11T21:07:00.000-07:002012-09-11T21:07:47.310-07:00Liver Walks and Liver Disease PR<br />
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I've always wondered why folks with liver disease didn't
organize events focused on Hepatitis, Liver Cancer and the other diseases that
can devastate the liver. Was it the broad diversity of the afflicted group?
Embarrassment about admitting to the disease? Shame about the possible, or
definite, way the disease was acquired? Indifference due to the long time-span
the disease takes to get really serious? A combination of all these? Who knows?</div>
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I arrived in San Francisco during the mid-1980s. It was
ground zero for the raging AIDS epidemic. The AIDS afflicted community, mostly
gay, began to mobilize early on to militate for research, awareness campaigns
within the community, demand for drug research, medications and
for companies to supply medications affordably. Perhaps because so many shared
a common sexual orientation and a definite us vs. them mindset, the community
was more predisposed to organize. Whatever the reasons, the AIDS community
jumped in with both feet and as a result, AIDS awareness, research, drug
availability and prevention education garner a great deal of attention
throughout the country.</div>
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It looks like the liver disease community is starting to
mobilize as well. <a href="http://fairpricingcoalition.org/2011/05/24/the-fair-pricing-coalition-expresses-disappointment-at-the-price-of-vertexs-newly-approved-hepatitis-c-drug/">The Fair Pricing Coalition</a> has been active in protesting the costs of treatment drugs, <a href="http://heprat.blogspot.com/search/label/celebrities%20with%20Hep%20C">celebrities with liver disease</a> have begun to come forward, and finally, The Liver Foundation is
sponsoring a series of <a href="http://go.liverfoundation.org/site/PageServer?pagename=2012_llw_walkinfo"> Liver Life Walks</a> in cities across the USA.</div>
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The Walk for a cause model is one of the oldest and most
effective tools for raising awareness of a cause. It spreads far wider than the
walkers themselves as family members, friends and sponsors of the walkers all
become more aware and more likely to be talking about the theme of the Walk. It
is also great therapy for the participants as they can band together to say
that the status quo is no longer acceptable.</div>
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I urge anyone who has Hep C, knows someone who has it or,
sadly, has lost someone who had Hep C, to join a walk, support a walker, or
just talk about Hep C if the subject comes up. The more people know about it,
the more likely they are to get tested, seek treatment and live better lives. </div>
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As my lovely wife put mentioned in the previous post, we
formed team Heprat for the SF walk and will be walking the, extremely civilized
1.5 mile, course this Saturday, Sept. 15th. The week after there is one in
Mpls/St. Paul, MN. and so on and so on. As the street hawker might say, Check
It Out!</div>
heprathttp://www.blogger.com/profile/07995268856694252260noreply@blogger.com13tag:blogger.com,1999:blog-5752917155289539180.post-87234502892494283552012-09-08T11:40:00.002-07:002012-09-08T11:58:15.784-07:00Support Team HepRat For the September 15, 2012 Liver Life Walk in San Francisco<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhh-T-xRHBEajdCON-Jvod8JFKcpENNFKAUSv54OF-T7V8opQgY8aKvrRr_E3m3ViSu33_o9rIhcsZFfakGVxHF0L2FQMyxkYKcaFE5GfyWsBm2SJF3JvFmw9VQJw5CKGRJ47neXMVYMTE/s1600/team_h-rat_gr.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhh-T-xRHBEajdCON-Jvod8JFKcpENNFKAUSv54OF-T7V8opQgY8aKvrRr_E3m3ViSu33_o9rIhcsZFfakGVxHF0L2FQMyxkYKcaFE5GfyWsBm2SJF3JvFmw9VQJw5CKGRJ47neXMVYMTE/s1600/team_h-rat_gr.jpg" /></a></div>
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<span style="background-color: white; font-family: Arial, Helvetica, 'Nimbus Sans L', sans-serif; font-size: 13px; line-height: 15px;">I've joined the Liver Life Walk in San Francisco as part of </span><a href="http://go.liverfoundation.org/site/TR/LiverLifeWalk2012/LiverLifeWalk?team_id=39530&pg=team&fr_id=2901" style="font-family: Arial, Helvetica, 'Nimbus Sans L', sans-serif; font-size: 13px; line-height: 15px;" target="_blank">Team HepRat</a><span style="background-color: white; font-family: Arial, Helvetica, 'Nimbus Sans L', sans-serif; font-size: 13px; line-height: 15px;">, in honor of my husband, the author of this HepRat blog, who has recently struggled with liver issues and the side effects of current treatments. Visit this link to read more or support our cause:</span><span style="background-color: white; font-family: Arial, Helvetica, 'Nimbus Sans L', sans-serif; font-size: 13px; line-height: 15px;"> </span><b style="font-family: Arial, Helvetica, 'Nimbus Sans L', sans-serif; font-size: 13px; line-height: 15px;"><a href="http://go.liverfoundation.org/site/TR/LiverLifeWalk2012/LiverLifeWalk?team_id=39530&pg=team&fr_id=2901" target="_blank">GO TEAM HEPRAT</a></b><span style="background-color: white; font-family: Arial, Helvetica, 'Nimbus Sans L', sans-serif; font-size: 13px; line-height: 15px;">!</span><br />
<br class="Apple-interchange-newline" />C. Willenhttp://www.blogger.com/profile/03409503509151850237noreply@blogger.com0tag:blogger.com,1999:blog-5752917155289539180.post-48502164482968851222012-08-21T21:19:00.000-07:002012-08-21T21:19:48.829-07:00Long Term Side Effects: Everything is a little bit hotter.<br />
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<b>My core temperature has changed. </b></div>
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I was out at the <a href="http://www.beachchalet.com/">Beach Chalet</a> restaurant this past Sunday
with my wife and a few friends listening to one of our favorite bands, the
<a href="http://www.aquavelvets.com/">Aqua Velvets.</a> The restaurant itself is just across the Great Highway from the
beach and a perfect setting for the Surf Jazz the band features. It was a
typical San Francisco summer afternoon with a bit of fog and a very slight
breeze that, thankfully was shielded by the of the restaurant building. The
temperature was in the mid-60s. I was wearing a T-shirt and a long sleeve dress
shirt that was unbuttoned over a pair of jeans and I was perfectly comfortable.
I was thinking about it while sitting there and it reinforced the fact that one
of the long-term side effects of the of the<a href="http://en.wikipedia.org/wiki/Hepatitis_C"> hepatitis C</a> chemotherapy treatment
process is that my temperature comfort level has moved a bit lower on the
spectrum. In the old days on an afternoon like that I would've been wearing a
sweatshirt at least and perhaps even a light jacket over a sweatshirt. The
breeze would've chilled me, my hands would have been cold and while I would
have stayed and listened to the band, I would not exactly have been
comfortable.</div>
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Now however it seems I am much better suited to the San
Francisco climate. Many days I wear an undershirt with a long sleeve shirt over
it, either a T-shirt or golf style
shirt or a button-front dress shirt and that's all I wear (except for pants, I
still wear pants even after chemo...).
I generally don't need to wear a jacket or I can carry a light fleece
jacket with me to can put on only in the evening when the temperature drops
into the very low 60s or the wind kicks up. In the old days, pre-treatment, I
would always follow the San Francisco prescription of dressing in layers with a
shirt, sweatshirt and jacket always with me and most often all worn at the same
time. That is no longer the case.</div>
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Many of the
long-term side effects that have stayed with me since the hepatitis C chemo are
not ones that I have enjoyed or have not been ones that have benefited me in
the long term. This one however is definitely an advantage. While I am no
longer is able to tolerate warm temperatures as well as I was in the past and
truly hot weather really leaves me exhausted, that's not the sort of weather
that we have very often in San Francisco. Now I appear to be better adapted to
my environment and I can tolerate the city that before I always used to find
much too cold for my taste.</div>
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If global warming really intensifies in the long run, this
and may not be an advantage. But for right now and for the next few years it
may very well end up being the best side effect of being treated for hepatitis
C.</div>
heprathttp://www.blogger.com/profile/07995268856694252260noreply@blogger.com3tag:blogger.com,1999:blog-5752917155289539180.post-38493602146564580512012-06-25T18:49:00.000-07:002012-06-25T18:49:06.755-07:00The Day My Energy Returned<br />
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For the first several months after completing the ribavirin
and interferon standard therapy I still had a
very low energy level. It wasn't exactly exhaustion but it was a
situation wherein if I did anything more than normal exertion it would wear me
out and I would need to take a nap or at least sit down and rest. On a normal
workday, I would work seven or eight hours go home and not be able to do
anything in the evening unless I took a nap after work. If it were a
particularly hard day at work I wouldn't really have the energy to do anything
whether or not I rested after I got home. This gradually improved as the months
went by but there was no breakthrough, there was no point when I felt that my
energy level had returned to normal. It was just a holding pattern with very
gradual improvement.</div>
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This continued until about mid-March of this year. At that
point, almost 9 months to the day when I had finished treatment, it felt as
though a switch was thrown and suddenly I had my energy back. I could move
faster, I had a bit more strength, but more importantly I was not exhausted by
doing basic physical activities. I'm not sure why this occurred when it did.
Other people who have been through treatment have told me that you have to
completely ignore the time frames that the medical professionals give you for
recovering from treatment. Most of the literature indicates one to 3 months,
some say 3 to 6 months. People who have gone through treatment that I have
talked to state almost unanimously that you will not get back to normal until
the same number of months have passed from the end of treatment that you spent
in treatment itself. I was in treatment for 18 months and the amount of time
passing before I began to feel a genuine return of energy or and w
approximation of the way I felt before treatment began was nine months, so
perhaps there is a correlation where one month of recovery for every two months
of treatment will eventually return you to at least a semblance of your
previous state. Whatever the case, I don't have a specific reason related to
the treatment that would indicate to me why suddenly I began to feel better.</div>
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I still have a long way to go. I feel tired after levels of
exertion that would not have tired me nearly as much before the treatment
began. I also still feel some cognitive and memory deficits that I truly hope
will go away as more time passes from the end of treatment. I still hold out
the faint hope that my thyroid gland may eventually recover some of its
function. At this point, being able to do what I can now is a wonderful thing. </div>
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I suspect the change may have had something to do with the
time of year if nothing else. I began to feel better around the beginning of
spring and two things happen around that time. Daylight savings time starts,
and the weather begins to dry out and get warmer. The combination of the sun
not setting a 5:30 p.m. and better weather no doubt did a great deal to
energize my body and my mind. I don't think it's a complete explanation, but it
must have had an effect. Another thing that happens at that time of year is
that spring training for the baseball season is coming to a climax and the
start of the regular season is just a
few weeks away. I have loved baseball since I was a boy and I'm sure that the
excitement of the upcoming season must have given me some energy as well. My
fantasy baseball draft was only a few weeks away and that always sharpens the
concentration and brings on the energy.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So who knows. perhaps it was not some set period of months
after the end of treatment that triggered the renewal of my energy but instead
was simply a combination of longer days warmer days and the start of baseball
season. Whatever reason or combination of reasons it was I'll take it. I was so
tired of being tired, so tired of being somewhat depressed and so tired of
having my muscles feel sore and weak that whatever the reason it's good enough
for me.</div>heprathttp://www.blogger.com/profile/07995268856694252260noreply@blogger.com4tag:blogger.com,1999:blog-5752917155289539180.post-62422347685823283022012-02-29T20:31:00.000-08:002012-02-29T20:31:11.160-08:00Long-Term Side Effects - The Thyroid Gland<br />
<div class="MsoNormal">
The <a href="http://en.wikipedia.org/wiki/Interferon">interferon</a> and <a href="http://www.nlm.nih.gov/medlineplus/druginfo/meds/a605018.html">ribavirin</a> chemotherapy has been over for
eight months. That seems to be an appropriate amount of time to examine the
long-term side effects of the therapy. In an early post, (<a href="http://heprat.blogspot.com/2010/01/side-effects-whose-idea-was-this.html">which you can get byclicking here</a>), I listed all the side effects of both the <a href="http://clinicaltrials.gov/ct2/show/NCT00869661">polymerase inhibitor test drug RG7128</a> and the standard interferon and ribavirin chemotherapy. It is
a long list. While some of the side effects are relatively mild, a significant
number of them are potentially very serious.
The one on which I'd like to concentrate today is the effect of the
therapy on the<a href="http://en.wikipedia.org/wiki/Thyroid"> thyroid gland.</a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
In the initial literature handed out at the beginning of the
experimental trial, it was noted that the functioning of the thyroid might be
affected and in some cases the effects might be permanent. The wording of the
literature led one to believe that while thyroid function might be affected
during the trial, there was a good chance that the thyroid would return to
normal after the interferon and ribavirin was stopped. At about the 6-week mark
of the trial my thyroid function numbers began to deviate from normal. The
level of <a href="http://en.wikipedia.org/wiki/Thyroid-stimulating_hormone">TSH</a> in my blood (which stimulates the thyroid when it’s activity is
low) began to rise. During the next few weeks it tested at 10 iu/ml and then at 25 and 30
and then finally at 55. This level indicates that thyroid gland is
not functioning remotely normally. At this point I was put on <a href="http://www.medicinenet.com/levothyroxine_sodium/article.htm">levothyroxine</a> and
within about 3 weeks my thyroid level was back to normal. I stayed on the
levothyroxine for the rest of the time I was in the experimental trial and
continued it through the transition to the standard of care interferon and
ribavirin chemotherapy. I was on that program for an additional 13 months and I
stayed on the thyroid medication the entire time.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
When the standard chemotherapy ended I talked to the
<a href="http://en.wikipedia.org/wiki/Gastroenterology">gastroenterologis</a>t at Kaiser who runs their <a href="http://en.wikipedia.org/wiki/Hepatitis_C">Hep C </a>program about procedure that
I should use to wean myself off the thyroid medication to return to normal
thyroid function without medication. In reply to this question, he replied that
in his experience the standard of care interferon and ribavirin combination
usually burned out the thyroid gland and I would most likely be on thyroid
medication for the rest of my life. Knock me over with a feather. This was not
what I had assumed to be the case nor was it the case that was presented in the
initial discussion of side effects at the beginning of the experimental trial.
I have no idea what my reaction would have been if the potential thyroid
effects had been described in that manner. I may have decided to go through
with the trial anyway and may not have, but I do wish that the information had
been stated in a very clear and concise manner. It leaves one with the feeling
that the research doctors know damn well that the thyroid side effects are
likely permanent, but that it is not to their advantage to say that. If you
tell someone that there is an interferon-based regime that, with the addition
of an experimental drug, will have a 75% chance of curing hepatitis C but will result
in the permanent sacrifice of the thyroid gland, how would they find enough
subjects for their drug trials. Would anyone short of those whose life was
truly in danger because of the effects on the liver of hepatitis C be willing
to go through an interferon-based therapy? </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
If the choice had been put to me that way, I certainly don’t
know what I would have done. I knew
then that my liver was not in bad shape. My liver functions were abnormal and
my viral load was very high but my liver itself was not badly swollen and did
not exhibit heavy scarring. I might have just said let's wait till newer
therapies become available, though at the time it was not known that any drugs
would be coming through the pipeline soon that did not involve using interferon
and ribavirin as well. I don't know what I would have done but I wish I had
better information when I made the choice.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Not wanting to believe that I was one of the people whose
thyroid was burned out, I decided to wean myself off the levothyroxine and see
what happened. I started out by taking my normal dose (100 mg) for the first
two months after the end of the therapy. At that time I reduced my dose to one
half (50mg) for the next month and then reduced it further to 50mg every other
day for another 6 weeks. I stopped taking the levothyroxine for the final 3
weeks before my six-month viral load test. I asked my doctor to test my thyroid
enzyme levels at that test because I had been attempting to wean myself off the
levothyroxine. He agreed and when the test came back my TSH hormone level was
at 53 indicating that indeed my thyroid was not operating and may never operate
again. So I am back on levothyroxine and probably will be for the rest of my
life. It's an uncomfortable feeling to know that your health will always be
dependent on your ability to secure a supply of a particular drug that provides
an essential ingredient for your survival but it's certainly not unique to me.
People with diabetes have had to deal with this for a very long time, as have
people with AIDS and folks with other diseases that I am no doubt forgetting
about. It's just one of those things.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
But it's something to consider if you are in a position of
entering any therapy or drug protocol in a drug trial that uses interferon.
Whatever benefits you are going to be getting from the use of interferon will
most likely come at the cost of your thyroid gland. Weigh it carefully. It may
be the lesser of two evils and you may decide to go-ahead with the therapy but
always remember the costs that will be exacted.</div>heprathttp://www.blogger.com/profile/07995268856694252260noreply@blogger.com3tag:blogger.com,1999:blog-5752917155289539180.post-53114310188638925272012-02-08T21:09:00.000-08:002012-02-08T21:09:06.603-08:00Six Months Later…Viral Breakthrough<br />
<div class="MsoNormal">
<br /></div>
<div class="MsoBodyText">
I recently had six month after treatment blood test to determine
if I achieved a sustained viral response or <a href="http://hepatitis.about.com/od/treatment/f/SVR.htm">SVR</a>. The results came back today
and the <a href="http://digestive.niddk.nih.gov/diseases/pubs/chronichepc/">Hep C</a> virus is back. My <a href="http://www.webmd.com/hepatitis/c-hcv-viral-load">viral load</a> is currently at 1 million IU/ml. This completely
sucks. 18 months of <a href="http://en.wikipedia.org/wiki/Interferon">interferon</a> and <a href="http://www.nlm.nih.gov/medlineplus/druginfo/meds/a605018.html">ribavirin</a> including 5 months of an
experimental <a href="http://clinicaltrials.gov/ct2/show/NCT00869661">polymerase inhibitor RG7168 aka RO5024048</a> that produced the <a href="http://www.hepatitis.va.gov/vahep?page=prtop04-cs-01">side effects</a> of weight
loss, depression, inability to concentrate, lack of energy, memory going to
hell, anemia, and I'm sure others, that the memory problems prevent me from
remembering; all of this to achieve nothing. It is getting hit by the <a href="http://heprat.blogspot.com/2010/06/million-pound-shit-hammer.html">million pound shit-hammer</a> all over again.</div>
<div class="MsoBodyText">
<br /></div>
<div class="MsoBodyText">
I knew at the
beginning that the traditional therapy only resulted in a 45% chance of
clearing the virus. So when I had the chance to get into the trial of the RG 7128 aka RO5024048 polymerase inhibitor which, in
early-stage experiments had demonstrated a rate of clearing the virus of up to
75%, I jumped at it. I'd hoped that the experimental drug would clear the
virus. Even after the <a href="http://www.sfaf.org/custom/glossary.aspx?l=en&id=1518">viral breakthrough</a> that resulted in my expulsion from the test group I
still thought that transitioning to standard therapy after the initial
success of the experimental drug might give me a small leg up on clearing the
virus. </div>
<div class="MsoBodyText">
<br /></div>
<div class="MsoBodyText">
Perhaps the fact that it took 12 weeks for the traditional
interferon/ribavirin therapy to bring my viral load down from only 40,000 IU/ml to clear
should have tipped me off. Maybe it should have shown me that the strain of virus that I have would
be resistant to my own immune system and traditional therapy and I would
perhaps be more likely not to clear the virus then to succeed, but no one wants
to face that possibility. When you have already been in a process for six
months and you've already faced the side effects and found that, to a point,
you can handle them; and you believe you have a chance of clearing the virus;
and you don’t know what your health insurance is going to be like in another
year or two or whenever a new therapy might come online; and the fact that you
have insurance now; and you’re stubborn and you're optimistic; it all puts
you in a mind to say I'm going to see if sticking this out will succeed in
bringing me to a sustained viral response and a cure.</div>
<div class="MsoBodyText">
<br /></div>
<div class="MsoBodyText">
Well it didn't. So in a sense I look at the last two years
of my life, the 18 months on the therapy and the six months beginning to
recover from it until the day of the test, as being wasted. I did not get much
accomplished during those two years. While I was able to do very good things at
work (including expanding the scope of my operation, systematizing and streamlining
all of the processes, integrating a part-time person and training them in
handling the basics of the operation, and increasing sales and average of 25%
per year), that is cold comfort. Just doing that, just functioning on a
day-to-day basis and going to my job eventually took so much energy that it
left little time and little energy for any part of a personal life. My work and
efforts as a sculptor were minimal, my ability to do things with my friends and
family were cut way down by the fact that it was exhausting to do anything for
very much time at all. It all infuriates me even though I knew that it was only
a 50% chance at success. I don't think anyone ever enters a situation like this
thinking that they're going to fail and I certainly didn't. The fact that the
therapy did not work leaves me feeling somehow cheated. It's not rational, but there it is. You feel that if you spent that much time, that much energy (or lack of it) invested that much hope and effort, something better should have happened. It didn't and I feel somehow empty. </div>
<div class="MsoBodyText">
<br /></div>
<div class="MsoBodyText">
All that being said, on the good side all my <a href="http://www.liverdisease.com/liverenzymes_hepatitis.html">liver functions</a> are normal. My doctors tell me that the results that they're getting
from the liver tests would indicate that the time that I spent clear of the
virus during the therapy, (which totaled about 12 to 14 months out of the 18),
allowed my liver to begin to heal itself. The swelling is reduced. It is
functioning well and I have bought additional time with a healthy liver. I also
learned that I can handle the therapy. I learned that the side effects I got
with the standard interferon ribavirin
chemotherapy and with the RG7128 are ones that I can manage. I know that
a lot of people have a much more difficult time than I ever did during the
traditional therapy. There are people who are so exhausted they can barely
move; people whose anemia is frighteningly intense; people who have much more severe
depression; people who lose even more weight than I did; people who have even
less energy and people whose cognitive facilities and memory decline even
further than mine. I realize that the ones who have it far worse than I did
must feel even more empty or betrayed or depressed when they find out that it
didn't work. Because as difficult as it was for me, if I had gone through even
12 months of the sort of difficulties that others with this disease undergoing
the same therapy went through, I don't know if I could ever face doing it
again.</div>
<div class="MsoBodyText">
<br /></div>
<div class="MsoBodyText">
I'm sure at some
point I will do it again. I don't like the idea of managing this disease. I
don't like the idea of having something in my body that is gradually destroying
my liver, breaking down my cognitive functions and creating in the long run a
less energetic less mentally sharp individual. I don’t like the possibility of
developing serious liver problems that might include liver cancer, cirrhosis and
result in the need for a transplant. Though
my doctors told me that given my liver results I am the sort of person
who is more likely to die with hepatitis C than from hepatitis C, I don't want
to have it at all. The idea that a lifeless particle of protein wrapped around
some DNA is working its way through my body destroying my liver doesn't fit my
disposition. So I will try again at some point.</div>
<div class="MsoBodyText">
<br /></div>
<div class="MsoBodyText">
I don't know that
I will ever try interferon therapy again. It is extremely devastating and I
don't know if I can face it even though I do suffer it better than many other
people. There is a tremendous amount of research going on and a lot of that is
oriented towards non-interferon drug combinations to attack the virus. There's
a lot to look forward to and I know that I'm in good shape to see where it
leads. </div>
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<br /></div>
<div class="MsoBodyText">
It's still depressing, it still sucks but you buck up
and handle it the best you can. Even though I've been whining for most of this
post, I know that my life is a hell of a lot better than a lot of other people in the world and especially a lot of other people with Hep C. Besides, Spring Training is right around the corner and how can you stay depressed when pitchers and catchers report in only six weeks,</div>heprathttp://www.blogger.com/profile/07995268856694252260noreply@blogger.com4tag:blogger.com,1999:blog-5752917155289539180.post-66766551718705615512011-09-14T20:20:00.000-07:002011-09-14T20:20:44.914-07:00Sierra Vacation One Year LaterAt right about the halfway point in treatment last year, I took a short vacation to<a href="http://sfrecpark.org/CampMather.aspx"> Camp Mather</a> near Yosemite. It was a real challenge, particularly regarding side effects and was described in <a href="http://heprat.blogspot.com/2010/09/vacation-in-sierras.html">this post</a>. Having actually enjoyed it despite the difficulties, my wife and I decided to do it again this year. It was a vastly different experience.<br />
<br />
Right off the bat, we didn’t need to take refrigerated drugs and the daily dose of pills was down to two (a <a href="http://www.medicinenet.com/levothyroxine_sodium/article.htm">thyroid pill</a> and<a href="http://en.wikipedia.org/wiki/Citalopram"> Celexa</a>). Remembering last year’s difficulty breathing at altitude, I injected my last dose of Procrit a few days before we left. We then threw enough gear for a two month safari into the back of the pickup (it was a five day vacation – in a cabin) and headed up to Camp Mather.<br />
<br />
The biggest difference was the energy I had this year. Even being off the treatment drugs for only 10 weeks created a noticeable difference. There was a lot less exhaustion – I only needed to take one short nap every day – and I had the energy to do a lot more walking. I even played catch, Frisbee golf and kicked around a soccer ball with my wife during the stay. We even stayed up in the evening and played board games with some of our friends, though I crapped out on the late night wine and ranting sessions that are de rigueur for any vacation. It was wonderful to enjoy physical activities without gasping, nausea and spacing out.<br />
<br />
It’s great to feel some actual progress in recovering from treatment. I even pretend to see my hair growing back (I’m sure those dark hairs weren’t there before, both of them). Of course, after driving back to San Francisco, I went to bed and slept for 12 hours, then took an afternoon nap for two more. I guess I’m not quite yet the physical powerhouse I thought I was.<br />
<br />
<br />heprathttp://www.blogger.com/profile/07995268856694252260noreply@blogger.com2tag:blogger.com,1999:blog-5752917155289539180.post-40040629185783532212011-09-06T21:13:00.000-07:002011-09-06T21:20:17.796-07:00Seeing More Clearly After TreatmentVision changes are a big part of the side effects of both standard treatment and several of the additional drugs either approved (<a href="http://en.wikipedia.org/wiki/Boceprevir">boceprevir</a>, <a href="http://en.wikipedia.org/wiki/Telaprevir">telaprevir</a>) or under study for treating <a href="https://health.google.com/health/ref/Hepatitis+C">Hepatitis C</a> (<a href="http://clinicaltrials.gov/ct2/show/NCT00869661 RG7128">RO5024048 RG7128</a>). They can include blurry vision, changes in the strength of your vision, sparkles or light shows within or at the edge of your visual field and worst of all macular degeneration. The effects can vary in intensity during the course of treatment. Most of the visual side effects reverse after treatment is ended save for macular degeneration, which is permanent. In my case, the effects seem to be slowly reversing themselves.<br /><br />In <a href="http://heprat.blogspot.com/2010/02/chchchchanges.html">this post</a> (about 6 paragraphs down) there is a description of the onset of the visual side effects when treatment began. At the time the primary effect seemed to be a reduction in my ability to focus on things that were close-up in my visual field. I lost most of my natural monocular vision in which the left eye focused up close the right eye focused at a distance. It eventually progressed to the point that, at the end of treatment, there was little difference between the two eyes. The left still focused a touch better close up and the right a touch better at a distance, but there was no longer a significant difference. <br /><br />There was also some variation in the strength of vision. It seemed that from month to month there were variations in the amount of short sightedness I was victim to. Sometimes, it seemed my glasses were not nearly strong enough and other times they were far too strong. I took to not wearing them most of the time and carrying around reading glasses for when there was a need to focus closely (for those of you in the San Francisco Bay Area, Ichiban Kan the Japanese discount store has reading glasses for $1.50 per pair; and stylin ones at that). I decided not to get new glasses or even try to determine my prescription until the treatment was over.<br /><br />Several months after I had been dropped from the experimental study and was on the standard treatment, I began to notice that there were sparkles in my visual field. They were not large nor were they particularly intrusive, but they were apparent when I wasn’t focusing on a specific area. They were also apparent at the edges of the visual field, particularly in low light. I kept thinking that I saw something out of the corner of my eye and when I tried to turn and focus on it, there was never anything there. It took a while to realize that it was due to the sparklies and not to flies, birds, mice, rain, ghosts or any of the other things that appear in the corners of your vision.<br /><br />Now that 9 weeks have passed since finishing the <a href="http://en.wikipedia.org/wiki/Interferon">interferon</a> and <a href="http://www.nlm.nih.gov/medlineplus/druginfo/meds/a605018.html">Ribavirin</a> treatment, there has been some reversal of the visual side effects. The sparklies in the visual field and at the corners of my eyes are mostly gone. They still appear when I am very tired, but they may have always done that and I wouldn’t know it given the state of my memory. The variations in my strength of vision have stabilized as well. There are no longer times when I cannot wear glasses because they make my eyes hurt. Perhaps it is time to visit the eye doctor and get a new prescription and even new glasses (Costco here we come). There has been no change in the loss of monocular vision. My two eyes remain slightly different, but the old ability to read with the left eye and focus long-distance with the right seems to be gone permanently. <br /><br />The side effect of the eyes getting tired rapidly during reading and watching a movie, TV or computer screen has also begun to reverse. So much so that this past weekend my lovely wife and I were able to take in two movies in two days. These were not “films” either with long static takes of characters talking or meditative pans across beautiful scenery. These were eye-taxing action films with rapid changes in focus, explosions, chase scenes and all the things you watch movies on the big screen for. Yes, we saw “<a href="http://www.cowboysandaliensmovie.com/">Cowboys and Aliens</a>” and <a href="http://www.apeswillrise.com/">“Rise of the Planet of the Apes”</a> - two brilliant examples of all that is right in Hollywood filmmaking. At least with Hep C, the treatment doesn’t make apes smarter and people dead. We got that going for us…heprathttp://www.blogger.com/profile/07995268856694252260noreply@blogger.com2tag:blogger.com,1999:blog-5752917155289539180.post-11784615913814181212011-08-22T20:26:00.000-07:002011-08-22T20:29:50.988-07:00Leaving the Support Group
<br />As discussed previously in <a href="http://heprat.blogspot.com/2010/02/support-group-kindness-of-strangers.html">this post</a>, support groups are an excellent program for <a href="https://health.google.com/health/ref/Hepatitis+C">HEP C</a> sufferers. They provide a safe and secure environment to talk about the disease. They are a useful pool of knowledge about the side effects, the strategies for coping with them and, of course they provide a wealth of information about treatment. The sheer relief of finding people who have had similar trials, successes, and failures is worth attending in itself. All that being said, I stopped going to my support group in January of 2011.
<br />
<br />Some of the reasons are the same as the ones described in <a href="http://heprat.blogspot.com/2010/07/support-group-redux.html">this post</a>, some are more personal. The overall tone of the group began to seem as though it was a group therapy session for folks with social interaction deficits rather than a support group dedicated to dealing with HEP C. The amount of time spent discussing the relationships and personal difficulties of the people in the group began to outweigh the time spent discussing the effects of HEP C on their lives and the sharing of knowledge about facing and treating the disease. While this kind of discussion was clearly important to those who initiated it, it seemed to me to be a case of too much information and too much bitching. It never bothers me when someone bitches about the difficulties the disease or its treatment creates in their lives, it does not seem relevant to here repeated complaints about their fathers, mothers, brothers and others in their lives. This may very well be an example of my being selfish and not caring enough about my fellow HEP C sufferers. I fully admit this. But I would rather spend the time talking about the disease, the treatments, the knowledge others have about these things and the general state of the HEP C community, research and public awareness of the disease. All of these concerns can be personal and can intersect with the personal lives of the folks with the disease; I just don’t want to hear about their landlord having a problem with their cat.
<br />
<br />It came to a head when I realized that I had to take an <a href="http://www.drugs.com/ativan.html">Ativan</a> before going to the meetings in order to get through them without becoming anxious and upset. It seemed that the requirement to be tranquilized to go the meeting was probably a sign that they had outlasted their usefulness. I still remain in contact with a few of the people in the group, but the dynamics of the actual bi-weekly meetings just became more than I could stand.
<br />
<br />I still believe that support groups are a great resource. If you have one in your area you should definitely check it out. The chances are that it will be a great source of emotional support and information. Everyone with HEP C deserves all the support they can get and a support group is a great place to seek it. Perhaps those of us who are surly loners just can’t handle all that good feeling. Ah well…
<br />heprathttp://www.blogger.com/profile/07995268856694252260noreply@blogger.com1tag:blogger.com,1999:blog-5752917155289539180.post-77690288177040771962011-08-21T21:59:00.000-07:002011-08-21T22:05:54.261-07:00A Shout Out to Gregg Allman
<br />The television was tuned to one of those deep cable cultural stations which was running a German film from the thirties when they went to commercial. The ad started out with a voice over from Gregg Allman mentioning the <a href="http://www.thebighousemuseum.com/home/">Allman Brothers Museum</a> in Macon, Georgia. Then it morphed in a completely different direction. In a full-face statement, he announced that in 1999 he had been diagnosed with <a href="https://health.google.com/health/ref/Hepatitis+C">Hepatitis C.</a> He said that on his doctor’s advice he eventually acknowledged the reality of the disease and sought help. He said that he was glad he did and that doing so allowed him to not just have memories of the past, but to continue to make memories today. He urged people to go to <a href="http://www.tuneintohepc.com/">tuneintohepc.com</a> for more information and to get tested.
<br />
<br />Even though a number of prominent people in various walks of live have contracted HEP C, <a href="http://en.wikipedia.org/wiki/List_of_people_with_hepatitis_C">(list here)</a> there have not been a correspondingly large number who have spoken out about their disease. Natalie Cole, a fellow musician who is featured on the tuneintohepc.com website talked about the disease, how she got it and what the treatment was like in 2008. A link to one of the articles is <a href="http://www.webmd.com/hepatitis/news/20080910/natalie-cole-hepatitis-c-faq">here</a>. Pamela Anderson has talked about her disease as well. Allman talked to Sanjay Gupta on CNN about the disease, his cancer and his liver transplant earlier this summer <a href="http://thechart.blogs.cnn.com/2011/06/21/human-factor-allman-brothers-three-rules/">(link here)</a>. He also made the TV public service commercial noted above. I’m sure there are others, but just the fact that it is hard to identify them means that HEP C sufferers have not had the same celebrity support that folks with many other diseases have had.
<br />
<br />Folks who have HEP C, whether celebrity or no, have no obligation to reveal their health information to anyone. To assume that they bear greater responsibility to advocate for the disease is wrong. All of us may choose how we deal with the fact that we have it. Still, it would do a great deal for raising the awareness of HEP C if all of us who have it, especially celebrities, speak out about the disease, advocate for more research, and for those of us who have undergone treatment, inform people about what to expect if they decide to be treated.
<br />
<br />For now, though, I would like to thank Mr. Allman for making his public service announcement, for going on CNN and for being out front and straightforward about the disease. Let’s hope it leads a lot more people to be tested and to be able to consider treatment while their liver can still be saved.
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<br />heprathttp://www.blogger.com/profile/07995268856694252260noreply@blogger.com5tag:blogger.com,1999:blog-5752917155289539180.post-70874937708999732632011-08-18T19:54:00.000-07:002011-08-18T20:18:27.808-07:00New Drugs, New Treatments, New HypeIn mid-June of this year while at a baseball game watching my childhood hometown Minnesota Twins defeat my adopted home town team San Francisco Giants, a friend asked if I was excited about the news in the paper that morning about the new cure for <a href="https://health.google.com/health/ref/Hepatitis+C">Hepatitis C</a>. He said that it cured 80% of all patients in clinical trials and that the treatment might last only 24 weeks instead of the standard 48 week therapy. The news was stunning. Which drug was it? I had been keeping up with the various new drugs in the FDA approval pipeline and had never heard of one with a viral clearance rate of more than 65%. Of course he couldn’t remember the name and none of us had a smart phone with us, so it took until after game and back at home before I could do any research.
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<br /><a href="http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2011/06/23/MN701K1FVG.DTL">This article appeared in the San Francisco Chronicle.</a> It stated that about 80% of HEP C patients “with the most common strain” and relapsers from previous treatment were cured by the new drug. The drug was the protease inhibitor <a href="http://en.wikipedia.org/wiki/Telaprevir">telaprevir</a>, brand named <span style="font-style:italic;">Incivek</span> by its developer Vertex Pharmaceuticals. Imagine the amount of money they must have paid a naming company to develop that brand name; rolls right off the tongue. The results from earlier studies had indicated that telaprevir increased the <a href="http://hepatitis.about.com/od/treatment/f/SVR.htm">Sustained Viral Response (SVR)</a> in genotype 1 HEP C, the most common genotype infecting US residents, to 65%. It seemed prudent to search out the source material to sort out all these percentages. A quick search of the web found <a href="http://www.prnewswire.com/news-releases/fda-approves-incivek-for-hepatitis-c-122441703.html">this press release</a>. In the fourth paragraph of the release it stated that “The sustained virologic response for patients treated with Incivek across all studies, and across all patient groups, was between 20 and 45 percent higher than current standard of care.” This seems to indicate that the low end of the SVR rate was indeed 65% and the high end might be almost 90%. The article and press release also indicated that 60% of treatment naïve patients achieved a rapid viral response (RVR) in 4 weeks and these folks not only would only be in treatment for 24 weeks, but had a 90% chance of achieving an SVR as well. It is not clear what the SVR rate for the folks who don’t achieve a RVR and continue for 48 weeks of treatment has been in the tests. It is also unclear whether there is a difference in SVR rates between genotype 1a and 1b. Folks who had relapsed after previous treatments had a 32% SVR rate when treated with the telaprevir, <a href="http://en.wikipedia.org/wiki/Interferon">interferon</a> and <a href="http://www.nlm.nih.gov/medlineplus/druginfo/meds/a605018.html">Ribavirin</a> cocktail. This is very good news indeed for HEP C patients.
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<br />A month earlier, <a href="http://www.nytimes.com/2011/05/14/business/14drug.html">this article appeared in the NY Times</a> announcing the debut of Victrelis the brand name of <a href="http://en.wikipedia.org/wiki/Boceprevir">boceprevir</a> (again where do these brand names come from) another protease inhibitor, this one developed by Merck. This drug, which is taken for either 24 or 48 weeks in combination with interferon and Ribavirin, has an SVR rate for treatment naïve genotype 1 HEP C patients of 65-70%. The SVR rate for patients who relapsed after previous treatment is about 40%. Boceprevir is a bit different in that the patient starts with 4 weeks of standard treatment and then adds the boceprevir for either an additional 24 or 48 weeks depending on the viral response. So we have two competing drugs available whose addition to the standard of care treatment increases the SVR rate by a range of 20 to 40 percent. Good news indeed but what is the rest of the story.
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<br />The rest of the story has several chapters from side effects to cost of treatment. Looking at side effects first, both boceprevir (Victrelis) and telaprevir (Incivek) have additional side effects to add to those caused by interferon and Ribavirin and both can somewhat intensify the interferon and Ribavirin side effects as well.
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<br />Boceprevir can increase the risk of <a href="http://www.webmd.com/a-to-z-guides/understanding-anemia-basics">anemia</a> and <a href="http://en.wikipedia.org/wiki/Absolute_neutrophil_count">neutropenia</a>, cause strange taste sensations and cause intestinal tract issues.
<br />Telaprevir also increases the risk of anemia, causes diarrhea, and most importantly can cause an itchy rash. The rash can be serious enough to require that the patient stop taking the telaprevir.
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<br />The new drugs are very much like the established treatment in that those with lower <a href="http://www.webmd.com/hepatitis/c-hcv-viral-load">viral loads</a> at the beginning of treatment have a better chance of success than those with high viral loads. Also like the established treatments, anyone who has ever tried a treatment, whether standard or experimental, and failed also has a considerably lower chance of success.
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<br />Both drugs are protease inhibitors. This means that they inhibit the action of an enzyme that the virus needs to reproduce. They are similar to the protease inhibitors developed to fight the AIDS virus. This means that they must be taken on a fairly rigid schedule: three pills per day, one every eight hours. If that means waking up to take it, wake up you must. They also need to be taken with food, so you cannot pop a pill and run off. You have to have certain types of food with the dose of the drug. This means that for 12 weeks (telaprevir) or 24-48 weeks (boceprevir) your life will be scheduled around your drug dosing.
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<br />Both drugs are vastly expensive as discussed in<a href="http://www.aidsmeds.com/articles/incivek_price_advocacy_1667_20508.shtml"> this article</a>. Boceprevir/Victrelis will cost $1,100 per week making the cost of a full course of the drug either $26,400 (24 weeks) or $52,800 (48 weeks) depending on your viral response. Telaprevir/Incivek has been priced at $49,000 for the 12 week course of treatment. This cost is in addition to the $15,000-$20,000 (24 weeks) or $30,000-$40,000 (48 weeks) for the interferon and Ribavirin with which they must be taken. This also does not count the cost of the <a href="http://www.drugs.com/procrit.html">Procrit</a> to fight anemia ($500 per week) or the <a href="http://www.drugs.com/neupogen.html">Neupogen</a> to fight neutropenia (also about $500 per week) should you need them. There are also the costs involved with antidepressants, sleep medications, thyroid medications, pain medications and whatever you will be using to deal with the rash and itching in the case of the telaprevir.
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<br />It is also not clear how quickly insurance plans will add them to their drug formularies. Kaiser Permanente, my HMO here in California, has added both to its formulary. I do not know which other insurance providers have done the same. Even if they are added, it is not clear what the requirements will be for a patient to be eligible to be prescribed and how easily insurance companies will make them available. From an economic point of view they should make them easy to get as even at these prices the cost of treatment is still much less than the cost of a liver transplant.
<br />For those without insurance, I do not know how anyone but the wealthy could afford the additional cost. The cost of standard of care treatment is by itself so high as to exclude many HEP C sufferers from being treated. There are <a href="http://heprat.blogspot.com/2010/07/co-pay-prescription-assistance-programs.html">programs to assist those with low resources to get treatment</a> but even with the drugs deeply discounted the ability to come up with as much as $20,000 for a course of treatment would seem impossible.
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<br />Despite all these potential problems, the advent of new drugs to combat HEP C is excellent news. Ramping up the SVR rate to a range of 60% - 80% is a vast improvement over the standard of care treatment rate that topped out at 45%. Psychologically, it is far more encouraging to go into a course of treatment thinking you have a 2-1 shot at beating the virus than to go in thinking you have just under a 50-50 shot. These drugs are also only the leading edge of a wave of new drugs and new therapy approaches that are under research and testing. There are new polymerase inhibitor drugs that have SVR rates similar to telaprevir, but with fewer and less severe side effects. Testing on the holy grail of finding a treatment regimen that does not have to include interferon is also underway with early stage results coming in soon. Within the past year, scientists have discovered a method of growing the HEP C virus in the lab. This means that future early stage testing of drugs can be done directly on the virus instead of with animal models. This should increase the pace of research dramatically. In all it is a good time to have HEP C if you are one of us infected. There are established treatments, there are promising new treatments and there are drugs and treatments in the research and development pipeline that seem to point to future in which HEP C can be attacked and treated with a high expectation that it will be successfully cleared from the human body.
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<br />Perhaps we can believe the hype surrounding these new drugs. Despite the problems of determining the actual efficacy of the drug in your own case, the potential difficulties in obtaining and paying for the treatment and persevering through the side effects, they have advanced the cause of combatting Hepatitis C.
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<br />The more cures, the fewer pig livers will have to be implanted in humans (sorry, I’ve been reading far too many science fiction novels during treatment).
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<br />heprathttp://www.blogger.com/profile/07995268856694252260noreply@blogger.com1tag:blogger.com,1999:blog-5752917155289539180.post-44110406862285722882011-08-16T21:12:00.000-07:002011-08-18T20:12:51.061-07:00Changes In Visualizations During TreatmentThere is a great deal of evidence that creative visualization can influence the actual physical and mental performance of people in the real world. Studies have been done on academic test performance and athletic performance to use two examples and the evidence has indicated that if one group spends a specific amount of time visualizing successfully completing a task and another group spends the same amount of time practicing the task, the two groups have similar results upon undertaking the task. There is also evidence that the same sort of creative visualization influences recovery rates and treatment outcomes in disease situations.
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<br />It was with that in mind that I created my own visualization when I started <a href="https://health.google.com/health/ref/Hepatitis+C">HEP C treatment </a>in the <a href=" http://clinicaltrials.gov/ct2/show/NCT00869661">RG7128, RO5024048 clinical trial</a>. I imagined that the polymerase inhibitor RG7128 was an armored division of fast moving powerful tanks that struck quickly and with lethal force at the HEP C virus. The <a href="http://www.atdn.org/simple/pifn.html">interferon</a> and <a href="http://www.nlm.nih.gov/medlineplus/druginfo/meds/a605018.html">Ribavirin</a> were the methodical infantry units that followed the tanks and mopped up the remaining resistance from viruses that were either entrenched or bypassed by the fast moving armor. I visualized that image often throughout the clinical trial. After being <a href="http://heprat.blogspot.com/2010/06/thoughts-from-nail.html">tossed out of the clinical trial </a>because of a <a href="http://www.sfaf.org/custom/glossary.aspx?l=en&id=1518">viral breakthrough</a>, my visualization metaphor changed. My tanks had run out of gas and were now abandoned by the side of the road.
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<br />After <a href="http://heprat.blogspot.com/2010/06/bad-news-is-not-so-bad-news-1.html
<br />">transitioning into Standard of Care therapy </a>I still used a military image when I thought about my battle with the HEP C virus, but now it had switched to an image of slogging trench warfare with my infantry (interferon and Ribavirin) in hand-to-hand combat with the virus. It was going to be a 12 month struggle but they were attacking an already weakened foe and had strength of numbers and better supplies on their side. I used this image for several months and sure enough, after 14 weeks the numbers came back negative indicating my infantry were winning.
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<br />Then there was the <a href="http://heprat.blogspot.com/2011/03/puzzling-evidence.html">possible viral breakthrough in December</a> after six months of treatment and the subsequent return to being virally negative in January. The metaphor was fairly tattered by then but I tried to hold to it. As the months of treatment ground on and I eventually went on disability, the only military image that seemed to fit was the battle of Stalingrad; except I didn’t know which side I was on. Holding on till the end of treatment was the only concern. This carries on the military metaphor quite well actually. At the end of a long tour of duty on the front lines, the primary concern a soldier has is surviving until it is over.
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<br />At the end of treatment, the viral load was undetectable and the viral activity was negative so we can assume that the visualization was either successful and contributed to the treatment or at least did not inhibit the effectiveness of the treatment. I would recommend the technique to anyone undergoing any kind of treatment for disease. There is no need to use a military image, whatever is vivid and emotionally engaging will work. It is no doubt easier to maintain the metaphor for shorter treatments than longer ones, but anything that can help healing is worth pursuing. Just hope your metaphor doesn’t run out of gas on the side of the road. There is nothing sadder imaginarily speaking than watching your elite troops quit the battlefield.
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<br />heprathttp://www.blogger.com/profile/07995268856694252260noreply@blogger.com3tag:blogger.com,1999:blog-5752917155289539180.post-49875235620865050142011-08-12T19:53:00.000-07:002011-08-12T19:58:46.971-07:00Night Sweats Redux <br />After finishing 18 months of treatment involving powerful, side-effect laden drugs one’s expectations are that once you are no longer taking the drugs, you no longer experience the side effects. This does not exactly seem to be the case. Shortly after the first week following the end of treatment, I began to experience night sweats again.<br /><br />Within a few months of beginning the drug trial in 2010, I started to experience night sweats, as related in <a href="http://heprat.blogspot.com/2010/03/getting-sweaty.html">this post</a>. The night sweats were intense with heavy sweat soaking through sleeping clothes and even requiring changing the sheets in some cases. These went on for several weeks until my body seemed to adjust to the various drugs and they receded to only an occasional event. This was the norm for about a year until they became a bit more common during the final 8 weeks of treatment. They were still not the heavy sweats that characterized the early part of treatment, but they did happend a few times a month toward the end. <br /><br />About ten days after finishing treatment, I woke up on my back with a pool of sweat on my concave abdomen (did I mention that I had lost a bit of weight?). After a change of shirt and going back to sleep, I awoke later to the same condition. This happened three times during the night and by morning there were damp shirts hung all over the bedroom. It was unclear why it might be happening. My wife had recently had the flu and I was a bit feverish before retiring for the night so perhaps it was related to that. When it happened each night for the next week, it occurred to me that it might be related to the <a href="http://www.janis7hepc.com/symptoms.htm#common%20sysmptoms">HEP C</a> treatment. The heavy sweats have stopped, but in a milder form they have remained an event that occurs about 3 times a week. <br /><br />It is not clear what the cause is. In my darkest moments, I remember that the symptoms for the onset of acute HEP C are flu-like, including fever, sweating and muscle aches. I felt some of them at the start of this round of sweats but it does not seem likely the sweating would have continued on for several weeks after the other symptoms disappeared. In talking to folks who have had relapses after treatment, they report that they relapse within the first month, which would fit the scenario, but they do not report having symptoms. It could also be related to stopping the other drugs being taken to alleviate the side effects of the standard treatment. <a href="http://www.webmd.com/drugs/drug-9690-Ambien+Oral.aspx?drugid=9690&drugname=Ambien+Oral">Ambien</a> was something I was taking every day for the final 2-3 months of treatment as sleep was not something that came easily or often. Ambien is not something that should be taken daily and even Dr. Sue had been more worried about the addictive nature of that than of any of the other drugs I was taking. There are some withdrawal symptoms that are noted for Ambien, but they do not indicate that they would go on for weeks after stopping. It could be that the long term use of <a href="http://www.atdn.org/simple/pifn.html">interferon</a> and <a href="http://www.nlm.nih.gov/medlineplus/druginfo/meds/a605018.html">Ribavirin</a> has reset my internal thermostat. It always ran cold before as witnessed by the pile of covers on my side of the bed every night. Perhaps now it is more like my wife’s internal temperature gauge. She often sleeps covered only by a sheet on nights when I am swathed in blankets. <br /><br />I hope it is something as benign as my body permanently running warmer than it used to. If nothing else, surviving summers in San Francisco will be easier if running hot, than if constantly cold. Until more evidence is gathered, the jury is out. In the meantime I am busy brainwashing myself that it is NOT because of any recurrence of HEP C. <br />heprathttp://www.blogger.com/profile/07995268856694252260noreply@blogger.com1tag:blogger.com,1999:blog-5752917155289539180.post-34670801757628338032011-08-11T19:55:00.000-07:002011-08-11T20:05:08.481-07:00Money Saved Is Money Earned<div><br />In <a href="http://heprat.blogspot.com/2011/03/health-care-versus-health-insurance.html">one of the last posts I did before I lost the energy to continue writing</a>, I talked about the differences in care between a centrally administered health care organization (in my case the Kaiser HMO) and a health insurance model of care. One of the biggest differences is in the way drug prescriptions are handled. While under health insurance, the copayment for commonly prescribed drugs and drugs with generic equivalents was $15 for each prescription. Uncommon drugs or drugs whose patent had not yet run out or there were no generic equivalents available had much higher copayments depending on which supply store or agency you used. In the case of <a href="http://digestive.niddk.nih.gov/ddiseases/pubs/chronichepc/">HEP C</a>, the high-copayment drugs needed for treatment were <a href="http://www.atdn.org/simple/pifn.html">Interferon</a> (Pegasys), <a href="http://www.drugs.com/procrit.html">Procrit</a> and <a href="http://www.drugs.com/neupogen.html">Neupogen</a>. My copayment for each of these was $100 for a 4 week supply. These drugs had to be ordered many days in advance from an out of state specialty pharmacy that delivered them via express mail. When you added in <a href="http://www.nlm.nih.gov/medlineplus/druginfo/meds/a605018.html">Ribavirin</a>, the <a href="http://www.medicinenet.com/levothyroxine_sodium/article.htm">thyroid meds</a>, the <a href="http://www.webmd.com/drugs/drug-9690-Ambien+Oral.aspx?drugid=9690&drugname=Ambien+Oral">Ambien</a> for sleep, <a href="http://en.wikipedia.org/wiki/Citalopram">Celexa</a> for depression and the <a href="http://en.wikipedia.org/wiki/Vicodin">Vicodin</a> for the weekly bought of muscle pain, the copayments added up to $375 every 4 weeks. During the 7 months of Standard of Care treatment while covered by health insurance the grand total was roughly $2800 in copayments for the meds.<br /><br />Under the Kaiser HMO model of care, it is very different both in cost and the ease of getting the necessary meds. Kaiser has all the drugs available through their pharmacy. The is no longer any need for ordering interferon, Ribavirin, Procrit and Neupogen through an out of state mail order pharmacy; a pharmacy that had to send the stuff in an insulated carton with freeze packs and once mistakenly sent the meds to Canada. It can now be picked up at the local Kaiser pharmacy without the necessity for ordering many days in advance to make sure all the necessary approvals are in order. Kaiser also considers a standard order to be larger for some of the drugs than do the health insurance people which means there is more bang for the buck. The copay for the Ribavirin, Celexa, thyroid meds, Ambien and vicodin are still $15 but the prescriptions are for greater numbers of pills each. The interferon, Procrit and Neupogen all have a $25 copayment. In the case of the interferon and Procrit it covers a 4 week supply, for the Neupogen it covers an 8 week supply. Thus a 4 week supply of the necessary meds adds up to about $120. The savings amount to about $1500 for the length of treatment done while at Kaiser. This is not a trivial amount for the folks in my pay grade.<br /><br />There are a lot of other differences large and small, good and bad, between the two methods of supplying health care and I hope to go into them more in the near future. This difference however, is nothing but good. $1500 saved covers a full month of expenses in my world and that is the same as $1500 earned.<br /><br /><br /><br /><br /><a href="http://digestive.niddk.nih.gov/ddiseases/pubs/chronichepc/"></a></div>heprathttp://www.blogger.com/profile/07995268856694252260noreply@blogger.com2tag:blogger.com,1999:blog-5752917155289539180.post-77092931100341877392011-08-10T20:50:00.000-07:002011-08-10T21:02:45.583-07:00The Disability Two-Step
<br />Applying for Disability as mentioned in an <a href="http://heprat.blogspot.com/2011/08/disability.html">earlier post</a>, should be a relatively straightforward process. Contact your doctor and tell them you would like to go on disability and give them the reasons you feel it is necessary. With <a href="http://www.atdn.org/simple/pifn.html">Hepatitis C</a>, it is generally pretty standard for your doctor to have a very clear idea of what you are going through and why disability would help. You contact the state for a form, fill it out, take it in to your doctor, they fill it out, it is mailed back to the state. Then the state contacts your employer to confirm that you work there and what your salary is. You are sent a notification of the amount of money you will receive and within a few weeks of the start of your disability period, you begin to receive your benefits. Like all purportedly simple processes, the difference between the ideal and the real, the concept and the reality are far different. Such was the case with my claim as well.
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<br />After being advised by my friend Dr. Sue that I should go on disability, I approached my Human Resources department to get some basic information. They described the process, exactly as above, and that was the only thing they got right. They informed me that I would get between 75% and 95% of my normal pay but that I had to use up all my sick time before my benefits could start. Both of these statements were wrong. <a href="http://www.edd.ca.gov/disability/">California SDI</a> pays you 55% (in my case that meant $492/week) of your standard pay up to a maximum of $975 per week. So if you make $150,000 per year you would still only get $975 week. However, the benefits you receive from SDI are tax free, which makes them stretch further. You do not have to use up all your sick pay, if your employer grants you any that is. You only have to inform them if you are using any of it during the term of your disability claim. The HR folks also did not know what the status of my health insurance would be during the term of my disability. The moral here is check out everything for yourself, the professionals paid to assist you in these matters may not know what they are talking about.
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<br />I filled out the forms and took them to my doctor. He filled them out and they mailed them in to the state. The disability benefits start to accrue 9 days after the last day you work. I put down that my last working day was the 23rd of April. I also told them that I would be using 6 days of paid sick time to bridge the gap between my last day of work and the date my benefits began to accrue. This was fine with them and the said my benefits would start to accrue on May 1. The first payment would come 14 days after the benefits started to accrue. On May 2nd I received my official notice from the state of the amount of my benefits. Things seemed to be moving along well. On May 12th I received a notice that my benefits were not going to be granted and I could file an appeal if I so desired. The heartburn started on the spot. I called the included number and the courteous state employee told me that the notice of denial was a standard form they sent out when they had not yet received all the necessary paperwork. They had attempted to contact my employer 3 times by phone to no avail and had sent a form to them to fill out but had not yet received it back. He then told me to file an appeal to protect my rights and contact my employer to find out what was going on. I contacted them and was told that the form had been sent to the state the day before and they had no record of any phone calls about the matter.
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<br />A phone call to the state 5 days later to find out whether the form had arrived yielded the information that it had not. A different, but equally courteous, state employee said that employers failing to send in paperwork was the single biggest problem his agency had in processing claims. He said that the second most common problem they had in claim processing was doctors filling out the forms in completely unreadable handwriting. He mentioned that it was not uncommon for forms to be handed around the entire office in an attempt to find someone able to decipher what doctors had written on claim forms. He also said that filing an appeal was something I should do immediately. I filed an appeal that afternoon.
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<br />Two days later another courteous state employee called to inform me that they had received my appeal but still no paperwork from my employer. He then took my employment information over the phone and after asking me to swear that it was correct told me he would process the claim that afternoon. Seven days later I received my first payment. It was 25 days after my last day of work.
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<br />The form of the payment itself was another slight curveball. Rather than pay via check or direct deposit of funds into a bank account, the state of California now provides people who receive benefits with a debit VISA card. The disability account attached to that card is replenished by the state every two weeks with your payment. This is ostensibly to provide those without bank accounts an easier way to access their funds than taking a check to a check cashing shop. For anyone with a bank account it involves transferring money from the card to your account in order to pay your bills. VISA, of course, extracts small transaction fees for the various money movements. I can just imagine the VISA lobbyists talking to the state bureaucrats to get them to make this change. How many dinners, free trips and outright bribes did it take to get this deal done? Who knows, but credit VISA for seeing it through.
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<br />Things went swimmingly right up until I was about to finish up my treatment at the end of June. I contacted my doctor to confirm the end of my disability term and was astonished to hear that it was over on July 1. After asking how a patient who had been in treatment for 18 months and for whom the side effects were severe enough to eventually require a stint on disability could be considered fit to return to work full time 24 hours after the last dose of their treatment medication, they averred that they have made a mistake. After running some more forms back and forth and sending them in to the state, an extension till August 1st was granted.
<br />An issue of primary importance when considering disability is what the status of your health insurance will be during the time you are disabled. Your employer is not required to pay your health insurance. They may if they choose, but they do not have to. My employer cut off my health insurance and offered my <a href="http://www.cobrainsurance.com/">COBRA</a> while I was on disability. Given that COBRA payments would have been in the neighborhood of $750 per month, it would have used up about 35% of my benefits just to pay health insurance. Without health insurance I could not afford to continue treatment, so this is a crucial consideration. Luckily, my wife has health insurance under which the spouse can be covered. If this had not been the case, I could never have taken advantage of the disability benefits on which I had been paying premiums the past 10 years.
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<br />Disability is definitely something that anyone in treatment should look in to if it is available to you. The rest you get helps your mental attitude, you physical condition and leaves you in far better shape to survive and prosper from your treatment. Treatment can be brutal and disability benefits can relieve some of that brutality for you.
<br />heprathttp://www.blogger.com/profile/07995268856694252260noreply@blogger.com1tag:blogger.com,1999:blog-5752917155289539180.post-60332410149639395162011-08-08T19:56:00.000-07:002011-08-10T19:42:51.895-07:00Writing Checks My Body Can’t CashI was tired all weekend and am tired today. It appears that while the old mind thinks that I can work full-time with no problems, the body is more difficult to convince. There are a number of reasons that contribute to this fact.
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<br />The first is that 18 months of <a href="http://www.atdn.org/simple/pifn.html">interferon</a> and <a href="http://www.nlm.nih.gov/medlineplus/druginfo/meds/a605018.html">Ribavirin</a> just wear down your body. It is hard to understand just how pervasive that effect is until you try to return to your old activities. The body has to get used to the idea that it can do these things again. It also has to continue to rid itself of the toxins built up over the months of treatment.
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<br />Another is that the months of treatment that wore down the body also brought about an enormous lack of energy. This created a situation in which it was extremely difficult to exercise. Walking, stairs, lifting and carrying all leave you so exhausted that you have no incentive to keep attempting to be physically active. So the muscle you have left atrophies and leaves you weak as a kitten.
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<br />A third is that recovery from the <a href="http://www.webmd.com/a-to-z-guides/understanding-anemia-basics">anemia</a> brought on by the Ribavirin is much slower than expected. A month after finishing treatment and even though I have been injecting <a href="http://www.drugs.com/procrit.html">Procrit</a> weekly, my <a href="http://en.wikipedia.org/wiki/Hemoglobin">hemoglobin</a> is only at a little over 11. Given that it was at 15 at the start of this whole shebang, there is still quite a ways to go to get back to normal.
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<br />Finally, as I mentioned a bit earlier, I am genuinely weak as a kitten. A week after I stopped treatment, I began to do some light exercise to try to build up my strength and muscle tone. The amount of various exercises that I could (or more accurately, couldn’t) do was astounding. Just to give the most embarrassing example let’s consider lunges. These are the exercise in which you step forward with one leg, drop the opposite knee down until it touches the ground and then straighten up. I could do 3 on each leg or six total. In all the years I have ever done any of these sorts of exercises it was always possible to do 10 on each side or 20 total even when my condition was terrible. The worst part was that after doing the 6 I could do, my legs were stiff the next day. Yes, I just turned 58 and have had a long bout of drugs but still, that’s damn disappointing.
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<br />All this contributes to the fact that 5 full time days equals a full time weekend of rest and even then there is not enough time to revive.
<br />heprathttp://www.blogger.com/profile/07995268856694252260noreply@blogger.com0tag:blogger.com,1999:blog-5752917155289539180.post-87212238006435661472011-08-05T18:24:00.000-07:002011-08-10T19:40:13.764-07:00HungryAt the end of <a href="https://health.google.com/health/ref/Hepatitis+C">Hepatitis C</a> treatment on June 30, 2011 I weighed 166 lbs. (75 kilos), a loss of 35 lbs. (15.5 kilos) from my weight before the trial started. Granted, my lovely wife had been assiduously packing the weight on to me before the <a href="http://clinicaltrials.gov/ct2/show/NCT00869661 RG7128">drug trial</a> began so it wasn’t as if I lost only muscle, but still 15% of your body weight is nothing to sneeze at. The great majority of the weight loss, 25 lbs. (11 kilos) came in the first 5 months of the drug trial. It held steady for the first 6 months of standard treatment, then there was another quick 5 lb. drop. It plateaued again for another 4 ½ months and then there was another steady 1lb. per week drop till the end of treatment. It was as if the body dropped weight until the metabolism adjusted to the drugs, then held steady until the drugs broke through the plateau then dropped more weight until another adjustment was made and balance was achieved again.
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<br />The first week after I finished treatment was the same as being in treatment. My weight was steady, my appetite was suppressed, my energy very low. After about 10 days, it was as if a switch was thrown in my metabolism. I was hungry constantly. Breakfast in the late morning (I was trying to bring my sleep cycle into line with the rest of the world and not having a great deal of success), then a sandwich an hour later. Some sort of lunch at around 2 p.m. and again something to eat ever hour or so until supper; after supper, more grazing until bedtime. I even woke up hungry in the middle of the night and had to eat an apple or banana so I could get back to sleep. This continued day after day for about 2 weeks. I was astonished at how much I was eating after 18 months of trying to convince myself to eat anything. The only problem was that my diet hadn’t made a change from the on treatment period. My doctor had encouraged me to eat whatever seemed appealing in order to keep my weight up. This meant ice cream, baked goods, cheese etc. The problem now was that these foods were being consumed in large quantities. Two weeks after the eating began, I had gained 7 lbs. (3 kilos). That’s a lot of weight, especially when you look in the mirror and realize it went straight to your abdomen.
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<br />Some changes were made to the diet after that realization, cutting down on the ice cream especially and trying to manage the urge to eat. I am down to 3 meals a day without much between meal eating, but am still eating a great deal more at each sitting than during treatment. One month after my metabolism decided it wanted food again, I am 10 lbs. (4.5 kilos) heavier than at the end of treatment. My head likes to believe that the weight gain has begun to change to muscle instead of fat, but convincing my waist of that is a bit harder to do. Still, it is a wonderful thing to enjoy food again. There is nothing like enjoying fresh tomatoes on lettuce and toasted bread, grilled ribs, asparagus and a wonderful ripe peach. This sort of talk is making me hungry again and luckily it is just about time for dinner. So on that note, I will sign off and fulfill my task of gaining more weight. It is a difficult job, but someone has to sit down and do it.
<br />heprathttp://www.blogger.com/profile/07995268856694252260noreply@blogger.com0tag:blogger.com,1999:blog-5752917155289539180.post-91894318514599703512011-08-04T18:11:00.000-07:002011-08-10T19:38:19.142-07:00DisabilityWe went down to Los Angeles around April 1st this year for my fantasy baseball draft. We always follow the auction with a stay at our old friends Carol and Steve’s place in Santa Monica. While we were whiling away the weekend in the backyard (we might have done something else but I was too tired to do much of anything except whiling time away) our friend Sue came by to hang out. Sue is a doctor and works at a public health clinic. She has a lot of experience with chronically ill patients. After about a half hour of general chat, she turned to me and asked if I had ever considered going on disability. I told her I had been thinking about it, but hadn’t formally started the process. She said that she thought it would be good for me to do it. It seems my life had narrowed down to work, disease and sitting at home. She did not see that as a life and told me that disability would allow me to rest, be in better condition to help my treatment, and allow me to do some of the things that made life worthwhile. My wife agreed with her completely and between the two of them had convinced me to start the process by the time the weekend was over.
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<br />The process is relatively straightforward. You get a form from the state, fill it out, give it to your doctor to fill out and sign, and send it in to the state offices that handle disability. They contact your employer to determine if you actually work there and what your pay is and a certain number of days after your last day of paid work, you begin to accrue your disability benefits. They send you a check every two weeks once you have been accruing benefits.
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<br /><a href="http://www.edd.ca.gov/disability/">State disability insurance or SDI</a> is a short term program that is administered by the state and paid for by insurance premiums that are taken out of your pay. Therefore it is administered by the state and bound by state regulations. It can last up to a year. If you are disabled for longer than that you switch to <a href="http://ssa-custhelp.ssa.gov/app/answers/detail/a_id/326/~/apply-for-social-security-disability-benefits">Federal Long Term Disability</a> that is administered by the Social Security Administration. For <a href="https://health.google.com/health/ref/Hepatitis+C">HEP C</a> it is a standard process because HEP C is one of the conditions that are covered in the state regulations. Your doctor can just write in the definitions from the state manual on your form and it will be processed routinely. This is not to say there won’t be screw-ups, because there will, but at least you will be fixing problems in the process and not be trying to convince the state agency that they should be covering a non-standard condition. The bumps on the road to my approval will be discussed in an upcoming post.
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<br />I stopped working on April 23rd and started accruing benefits on May 3rd. It made a world of difference. I was able to rest. I slept 11-12 hours a night the first few weeks and took naps in the afternoon. I was able to get out of the house for brief excursions. I didn’t have to deal with the stress of work wearing me down. As I was mildly to seriously anemic during the last several months of treatment, being able to rest was hugely important. Dr. Sue and my wife were right, it definitely helped make life better and treatment easier to handle. I wish I had done it sooner. If I had, I might be less exhausted now that I am back to work.
<br />heprathttp://www.blogger.com/profile/07995268856694252260noreply@blogger.com1tag:blogger.com,1999:blog-5752917155289539180.post-32299008720520670032011-08-03T20:48:00.000-07:002011-08-10T19:31:09.305-07:00World Hepatitis Day – Who Knew?Thursday July 28, seven days ago, was <a href="http://www.worldhepatitisalliance.org/WorldHepatitisDay.aspx">World Viral Hepatitis Day.</a> The day was dedicated to raising awareness of all types of viral hepatitis and the populations they affect throughout the world. Did you know it was happening? If not for the efforts of the <a href="http://www.hepcsf.org/">San Francisco Hepatitis Task Force,</a> no one in my city would have known, myself included. Were it not for an email sent out by the task force recruiting volunteers for some boots on the ground outreach at transit stations in the city, it certainly would have passed me by. As it was about 50 hardy souls wore t-shirts, held up banners and handed out information cards during the morning and evening commute hours. Over 2500 cards were passed out during the day and thousands of other folks saw the signs and heard our pleas that they find out about <a href="https://health.google.com/health/ref/Hepatitis+C">HEP C</a> and get tested. We tried out numerous catchphrases such as: “Do your liver a favor, get tested,” “Seven out of ten people don’t know they have it,” “We never thought we had it,” “If you have a tattoo, you might be infected.” “I never knew I had it,” etc. I irresponsibly came up with a few others such as “If you have a tattoo you are already dying,” “If I have it, so could you,” “Don’t die not knowing what killed you,” “What you don’t know can kill you,” and others. Anything to break through the iPod, cell phone and traffic noise clutter. It was a worthwhile though exhausting effort but it left me wondering why we don’t have better outreach about Hep C.
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<br />If you remember the beginning of the AIDS epidemic, the gay community did a fantastic job of organizing to demand research about the disease, research about a cure, better treatment by medical professionals, and fairer treatment for infected individuals. They had the same problem as the HEP C community in that AIDS was seen as a disease that affected mainly people who the mainstream of society saw as deviants. With AIDS the victims were defined as promiscuous, drug using men who engaged in “perverted” behavior. With HEP C victims are seen as drug using losers. (There is a rumor in San Francisco that the local Hepatitis B community decided not to ally with the HEP C community in a previous outreach program because they did not want their cause associated with drug use.) The AIDS community worked hard and eventually triumphed over that stigma (though suburban white folks starting to get the disease via contaminated blood certainly moved America toward the realization that the disease was not the wrath of god, but rather and dangerous virus). They now get vastly more attention than the HEP C community even though there are 4 times as many HEP C sufferers as people infected with HIV/AIDS. Our community of infected people needs to start becoming a lot more aggressive in publicizing HEP C and the fact that is one of a family of viruses that can infect people who have never used drugs or indeed engaged in any behaviors mainstream Americans look down upon.
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<br />We can certainly learn some lessons from the AIDS community and lose our apathy, shyness or indifference. It is the only way we are going to get the treatments for HEP C widely distributed at an affordable price so we can save the lives of people who don’t need to die from HEP C.
<br />heprathttp://www.blogger.com/profile/07995268856694252260noreply@blogger.com0tag:blogger.com,1999:blog-5752917155289539180.post-15785914388208490082011-08-02T19:12:00.000-07:002011-08-10T19:11:01.496-07:00Speed Bump On The Road Back<div>Just in case I didn’t get the memo that it was going to be a long slow road back to full mental functioning, there was a reminder for me this morning. We had ordered a Chicago-style pizza for dinner last night and, as expected, there were leftover slices after we gorged ourselves. The plan was to take one of these massive wedges of dough and cheese to work for lunch. A good plan: easy, quick and needing minimal effort in the morning to prepare. Things did not quite work out that way.<br /><br />I got up, did my stretching, drank my green tea (this is California after all) and took out the container with the pizza and set it on the counter. After a quick bathroom break, I returned to the kitchen and realized lunch still needed to be made. After moving aside an annoying plastic container, I laid out bread, cheese, roast beef, tomato and lettuce. Just at the point of finishing the sandwich and putting it into the waxed paper bag, I looked down and saw the pizza sitting right there on the counter were it had lain, forgotten (indeed, even shoved aside) during the process of making the sandwich. It turns out that my brain is just as capable of being distracted and forgetful 4 weeks after finishing treatment as it was during the height of treatment. You could say that there is nothing like the feeling of foolishness that accompanies this sort of brain lock, but I have felt it so many times during the past many months that it has become all too familiar. Here’s hoping that the brain fog starts to burn off in the near future.<br /><br />The silver lining was that the pizza was just as good for dinner as it would have been for lunch.</div>heprathttp://www.blogger.com/profile/07995268856694252260noreply@blogger.com0tag:blogger.com,1999:blog-5752917155289539180.post-63491919941148226442011-08-01T17:58:00.000-07:002011-08-10T19:23:42.334-07:00Coming Back To LifeI finished my course of treatment for <a href="https://health.google.com/health/ref/Hepatitis+C">Hepatitis C</a> on June 30, 2011. The last 6 weeks were particularly tough with bouts of nausea, some dizziness, decreasing red blood cell counts, consistent exhaustion and increasing mental fog. Eighteen months of <a href="http://www.atdn.org/simple/pifn.html">interferon</a> and <a href="http://www.nlm.nih.gov/medlineplus/druginfo/meds/a605018.html">Ribavirin</a> apparently do a number on us humans. The good side is that at the end of the treatment cycle, the <a href="http://www.webmd.com/hepatitis/c-hcv-viral-load">viral load</a> was undetectable with negative viral activity. Now we wait for 6 months until January of 2012 for the follow-up test to determine if I have stayed negative and thus qualify for having a true <a href="http://hepatitis.about.com/od/treatment/f/SVR.htm">Sustained Viral Response or SVR.</a> It brings to mind the song from the Mel Brooks movie <a href="http://www.imdb.com/title/tt0066495/">“The Twelve Chairs”</a> with the chorus:
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<br />“Hope for the best, expect the worst
<br />Some drink champagne, some die of thirst,
<br />No way of knowing which way you’re going,
<br />Hope for the best, expect the worst.”
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<br />By the way, did you know that Mel Brooks wrote the music and lyrics for the songs in his movies.
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<br />So we are hoping for the best over the next six months (though the thought that the next test occurs in 2012, the year of the end of the world certainly tempers the enthusiasm).
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<br />We return to the subject of the post after that small digression. On about the 8th or 9th of July, I was lying on the sofa catching up on the episodes of <a href="http://www.vh1.com/shows/mob_wives/series.jhtml">“Mob Wives”</a> I had missed, when I thought about unloading the dishwasher and tidying up the kitchen counters. For months, this sort of urge was met with the thought that it could be put off until later that night or tomorrow or to some indefinite time in the future. But on this occasion, I arose from the sofa, walked to the kitchen and actually unloaded the dishwasher and wiped down the counters. It was the first sign that some mental and physical energy was returning. Over the next few days, I began to do a bit more. It was a great feeling to experience energy as opposed to lethargy. It genuinely felt like I was rising from the depths back to life. It’s going to be a long, slow struggle back to normalcy by all accounts, but as the old saying goes, “every journey begins with a single loading of the dishwasher.”
<br />heprathttp://www.blogger.com/profile/07995268856694252260noreply@blogger.com1