Aa
possible denial of therapy
I don't mean to sound stupid, but does anyone know, if there would be any possibility that one would be denied tx? Even though one has none of the described contraindications. If one had active chronic hep c stage 0 grade 0. Is one always eligible to receive treatment, or does it have to be worse? Does any one know? I haven't gotten any results, yet, but just wondering.
Thanks for your input. That really is quite an injustice. I do not understand why they do not treat people as soon as thy can, especially when they claim the younger the patient the better chance of SVR. I do not understand the logic behind it.
Anyway, my private insurance covers any difference between what the state pays and the end price of the meds. So I'm 100% covered. People who are chronically ill, can apply for government subsidiary. They will end up only having to pay ca. 400 EUR per year. Their doctor has to put the application electronically into the system. There are also some other rules for people in difficult social and financial difficulties, which i do not know. I skipped reading those rules. So it is not that bad at all. Everybody has a chance of getting treated, even if they don't have a private insurance. It would be terrible, if it was otherwise, considering the high taxes we pay here in DK. On top of that, there is 25% VAT on everything.
Good luck with the local government. That's the only way to go to spread some awareness. Et bon courage with tx, hope the road is not too rocky.
Marcia
Anyway, my private insurance covers any difference between what the state pays and the end price of the meds. So I'm 100% covered. People who are chronically ill, can apply for government subsidiary. They will end up only having to pay ca. 400 EUR per year. Their doctor has to put the application electronically into the system. There are also some other rules for people in difficult social and financial difficulties, which i do not know. I skipped reading those rules. So it is not that bad at all. Everybody has a chance of getting treated, even if they don't have a private insurance. It would be terrible, if it was otherwise, considering the high taxes we pay here in DK. On top of that, there is 25% VAT on everything.
Good luck with the local government. That's the only way to go to spread some awareness. Et bon courage with tx, hope the road is not too rocky.
Marcia
Hi Marcia,
I'm in Canada and we have the same situation here that apparently you do in Sweden and Denmark. We too are government funded "universal" health care. You are not denied treatment but you are denied FUNDING for the drugs until you are Stage 2 and beyond. I'm in a drug trial so that is not my issue. If I was not in a drug trial, my work insurance would cover the drugs 80%. Prior to the drug trial I had applied for the funding for the remaining 20% to the government health plan. I was denied because I was Stage 1, Grade 1 with normal ALT / AST. My GI wrote them again and more insistently this time, that he was a GI treating many Hep C patients and he was recommending treatment for me. My viral load was 1.3 mil + at the time, our PCR's don't go any higher than that in Canada. Soon to change apparently, but not yet.
Anyway, I was turned down a second time for the same reason, clinical data only and stating I would have to wait until Stage 2 and abnormal liver enzymes. Astonishing. Then the drug trial came along.
However. That's not quite the end of it for me since I consider this to be quite an injustice. There is MUCH more that a person with Hep C takes into account when deciding on treatment .. how old you are, what your life circumstances are and what you project them to be, what your support system is, etc etc etc!! I believe a person with Hep C should be able to have some decision-making ability over when they decide to go for treatment based on their own individual circumstances. 48 weeks of treatment is no small life decision!!
So .. I have written an email to my local government representative and I have an appointment with him now in a few weeks and I plan to press this issue. We shall see.
Do you have work insurance that will cover part? Good luck to you.
Trish
I'm in Canada and we have the same situation here that apparently you do in Sweden and Denmark. We too are government funded "universal" health care. You are not denied treatment but you are denied FUNDING for the drugs until you are Stage 2 and beyond. I'm in a drug trial so that is not my issue. If I was not in a drug trial, my work insurance would cover the drugs 80%. Prior to the drug trial I had applied for the funding for the remaining 20% to the government health plan. I was denied because I was Stage 1, Grade 1 with normal ALT / AST. My GI wrote them again and more insistently this time, that he was a GI treating many Hep C patients and he was recommending treatment for me. My viral load was 1.3 mil + at the time, our PCR's don't go any higher than that in Canada. Soon to change apparently, but not yet.
Anyway, I was turned down a second time for the same reason, clinical data only and stating I would have to wait until Stage 2 and abnormal liver enzymes. Astonishing. Then the drug trial came along.
However. That's not quite the end of it for me since I consider this to be quite an injustice. There is MUCH more that a person with Hep C takes into account when deciding on treatment .. how old you are, what your life circumstances are and what you project them to be, what your support system is, etc etc etc!! I believe a person with Hep C should be able to have some decision-making ability over when they decide to go for treatment based on their own individual circumstances. 48 weeks of treatment is no small life decision!!
So .. I have written an email to my local government representative and I have an appointment with him now in a few weeks and I plan to press this issue. We shall see.
Do you have work insurance that will cover part? Good luck to you.
Trish
sorry y'all. I'm mixing everyone and everything up. I think I got to go to sleep. I think I got it spcecst2 wants to be in Scandinavia ... I'd rather be somewhere where it's not so freakin' cold.
They denied you, cause no money??? I would have gone bananas, what about all the taxes we are paying. With those cut throat taxes we are paying here in the North, you could keep several people on tx. Can you imagine that governments cut down on the medical sector and send troops off to other countries to fight ridiculous wars. Hmmm... Okay, I don't wanna get all political now... sorry
Thanks for the tip. I have five kids from 24 to 17, and they only have me. They need to have a healthy mother. Anyway, they need to do something about it, one cannot go around with fatigue, pain and fogginess for years. Why would they want to wait until one gets worse and more difficult to treat. One doesn't get younger with time, either.
Can't wait to get my GT, really. At least that will give me some idea...
hepCC... where do you wanna be?
I'm sorry to hear that you relapsed, but good news with your bx. I really hope that you will beat it this time, but it's looking good so far!
Thanks for the tip. I have five kids from 24 to 17, and they only have me. They need to have a healthy mother. Anyway, they need to do something about it, one cannot go around with fatigue, pain and fogginess for years. Why would they want to wait until one gets worse and more difficult to treat. One doesn't get younger with time, either.
Can't wait to get my GT, really. At least that will give me some idea...
hepCC... where do you wanna be?
I'm sorry to hear that you relapsed, but good news with your bx. I really hope that you will beat it this time, but it's looking good so far!
I´m also from Sweden and three years ago they dinyed me tx the money is finito they explained.That was in20005 i had almust normal alt ast, so they thought it was now hurry.
they did a bx though with ultrasoud to guide them because they thought I was a little bit to fat, and they missed can you imagine ( maybee John Lennon could if he was still alive) didn´t got any sample from the liver just surondings of the liver
In the beggining of 2006 I phoned the doc and read the guidlines all geno 2 and 3 shall be treated emidiatly no bx nessesary because they are so easy to treat and their also more aggreiv to the liver then g 1, which is on the otherhand much more difficult to treat. I also said that i have three children and theire
mother is also infected she have geno 1a. I`m a g 3 and we have both had it a long time spec me, probebly since 1972
I told him that having it along time is not a good sign and he agreed, it can go very quick from state 0 and 1 to dangerous stats ,my theori is that if the liver and the immunal system is fighting against the virus for decades it will come to a point when the virus take over theres no acctually proofs for that
My theory but my doc said it could very well be so.
I got the treatment in sept 2006 finished feb 2007 was UND w 12 and 24 but unfortunatly
relapsed post 3months tx prob earlier .
I waited 10 months then started a sec tx jan2008 in a study for relapser.( danish study btw.)
Now money is not an ichy cause Roche is handing out the meds for free 48 weeks extending treatmean and higher doses first tx was really hell for me.
This time is much easyer so far( w 14 peppar peppar ta i trä )I´m on an other branch this time pegasys copegus instead of pegintron ribavirin
ps thought i got the tx mainly because new money had come in think its better to try to get a treatment in begging of new year.
ps finally did a bx two months before study treatment and it was stat 0 grade 1 no fatty liver no iron still waunt the buggers out though rarely heard of someone how had had it for 40years and still lives. .
they did a bx though with ultrasoud to guide them because they thought I was a little bit to fat, and they missed can you imagine ( maybee John Lennon could if he was still alive) didn´t got any sample from the liver just surondings of the liver
In the beggining of 2006 I phoned the doc and read the guidlines all geno 2 and 3 shall be treated emidiatly no bx nessesary because they are so easy to treat and their also more aggreiv to the liver then g 1, which is on the otherhand much more difficult to treat. I also said that i have three children and theire
mother is also infected she have geno 1a. I`m a g 3 and we have both had it a long time spec me, probebly since 1972
I told him that having it along time is not a good sign and he agreed, it can go very quick from state 0 and 1 to dangerous stats ,my theori is that if the liver and the immunal system is fighting against the virus for decades it will come to a point when the virus take over theres no acctually proofs for that
My theory but my doc said it could very well be so.
I got the treatment in sept 2006 finished feb 2007 was UND w 12 and 24 but unfortunatly
relapsed post 3months tx prob earlier .
I waited 10 months then started a sec tx jan2008 in a study for relapser.( danish study btw.)
Now money is not an ichy cause Roche is handing out the meds for free 48 weeks extending treatmean and higher doses first tx was really hell for me.
This time is much easyer so far( w 14 peppar peppar ta i trä )I´m on an other branch this time pegasys copegus instead of pegintron ribavirin
ps thought i got the tx mainly because new money had come in think its better to try to get a treatment in begging of new year.
ps finally did a bx two months before study treatment and it was stat 0 grade 1 no fatty liver no iron still waunt the buggers out though rarely heard of someone how had had it for 40years and still lives. .
Oh! Congratulations to your UND, how wonderful!
As to hospital, my MD did all the blood work. He will send all the results electronically to the hepa department next week. I guess once there, they order the biopsy. Don't know how long it will take to get the appointment for the biopsy, though. Maybe I can convince my GP to order the biopsy. It will be the hurry up and wait game, as someone graciously called it in this forum, think it was Meki.
I really wish you all the best.
As to hospital, my MD did all the blood work. He will send all the results electronically to the hepa department next week. I guess once there, they order the biopsy. Don't know how long it will take to get the appointment for the biopsy, though. Maybe I can convince my GP to order the biopsy. It will be the hurry up and wait game, as someone graciously called it in this forum, think it was Meki.
I really wish you all the best.
Do come again and try the ferries between Helsinore in Denmark and Helsingborg in Sweden :)
I'm glad to hear you are being referred to a hepatology department in a good hospital!
There are some differences between Danish and Swedish health care, and maybe they are bigger than I am aware of. I lived in Copenhagen many years ago, but things change, and I didn't need much health care back then.
When I said waiting time I was thinking from diagnosis to start of treatment. You are entitled to see a specialist etc here too, but the waiting still got to be 8 months for me. First see specialist, test for genotype and viral load. Then wait for biopsy a few months, then wait for results. Wait for new appointment, then wait to start treatment for another three months. I think I was a bit unlucky, but still, every step will take some time.
Treatment is no fun, but I feel lucky so far. 14 shots done, and UND since week 4.
Again, good luck to you!
There are some differences between Danish and Swedish health care, and maybe they are bigger than I am aware of. I lived in Copenhagen many years ago, but things change, and I didn't need much health care back then.
When I said waiting time I was thinking from diagnosis to start of treatment. You are entitled to see a specialist etc here too, but the waiting still got to be 8 months for me. First see specialist, test for genotype and viral load. Then wait for biopsy a few months, then wait for results. Wait for new appointment, then wait to start treatment for another three months. I think I was a bit unlucky, but still, every step will take some time.
Treatment is no fun, but I feel lucky so far. 14 shots done, and UND since week 4.
Again, good luck to you!
Used to be fun, the hydrofoil is gone, since they build the long bridge across. :-)
Thanks for your comment. I'm not sure that the Danish and the Swedish health care system is the same. I have seen differences in the past. I am actually half Swedish, born in Solna, Stockholm. Don't speak Swedish though.
The waiting time in DK for any 1st appointment with a specialist, as per Oct. 2007, has been limited from 2 months to 1 month. If they cannot see you within 1 month, they have to refer you to either a private hospital or to a hospital abroad. My GP will be referring me to Hepatology Department of Rigshospitalet in Copenhagen, as soon as he has the results of my GT. They have 6 weeks waiting time, at the moment. I prefer to get treated at this hospital and wait 2 weeks longer, as it is supposed to be the best we have in conjunction with Ålborg. As an added bonus, it's only five minutes drive from my home. How more convenient could that be. Good luck to you with tx, hope it's not to hard on you.
The waiting time in DK for any 1st appointment with a specialist, as per Oct. 2007, has been limited from 2 months to 1 month. If they cannot see you within 1 month, they have to refer you to either a private hospital or to a hospital abroad. My GP will be referring me to Hepatology Department of Rigshospitalet in Copenhagen, as soon as he has the results of my GT. They have 6 weeks waiting time, at the moment. I prefer to get treated at this hospital and wait 2 weeks longer, as it is supposed to be the best we have in conjunction with Ålborg. As an added bonus, it's only five minutes drive from my home. How more convenient could that be. Good luck to you with tx, hope it's not to hard on you.
I was in Copenhagen and rode a hydrofoil across to Sweden it was a good time but many years ago!!!!!!!!!!!!!!!!!
Hi there marcia2202,
I'm in Sweden. Here in Sweden you would most likely not be treated if biopsy said 0/0. The guidelines here say inflammation grade 2 AND fibrosis stage 2, or more, to get treatment. The guidelines also say other factors could be considered (social, work, easy to treat etc), but it's less common to get treatment without liver damage. It's an expensive treatment, so each hospital makes priorities. Where I'm treated only the ones with significant liver damage get treatment due to lack of money. The only exception is if you are included in a trial (not likely, not many trials here), or if you are co-infected with hiv.
Waiting times can be quite long to, up to a year is not uncommon.
I think it might be similar in Denmark from what I've read. Not everyone gets treatment.
You can still try to be persistent about having treatment. Guide lines are guide lines, not absolute rules.
Good luck with your biopsy results!
CC
I'm in Sweden. Here in Sweden you would most likely not be treated if biopsy said 0/0. The guidelines here say inflammation grade 2 AND fibrosis stage 2, or more, to get treatment. The guidelines also say other factors could be considered (social, work, easy to treat etc), but it's less common to get treatment without liver damage. It's an expensive treatment, so each hospital makes priorities. Where I'm treated only the ones with significant liver damage get treatment due to lack of money. The only exception is if you are included in a trial (not likely, not many trials here), or if you are co-infected with hiv.
Waiting times can be quite long to, up to a year is not uncommon.
I think it might be similar in Denmark from what I've read. Not everyone gets treatment.
You can still try to be persistent about having treatment. Guide lines are guide lines, not absolute rules.
Good luck with your biopsy results!
CC
I have never heard of it happening but if a doctor were to be a stickler and say it's not necessary the insurance company probably could get out of it...I mean i figure roughly my 72 weeks of treatment cost almost $200,000 or so - if they can avoid putting that cash out you know that they sure will (this includes all meds and stuff not just the $20k interferon portion. Also the Epogen, Ambien, Paxill, etc. etc.)
I'm curious which insurance companies you are talking about. I am in contact daily with people from all over the U.S due to my job and no one has had trouble getting their treatment approved....at least not their first treatments. Sometimes, if a patient does not SVR, the insurance companies do not want to pay for another treatment, but honestly I don't anyone who hasn't been successful with getting their first treatment paid for.
Thanks a lot for all the answers. Sorry I forgot to mention that I live in Denmark, so health insurance is not a problem, as we have a free health care system here. And I also have a private insurance on top of that. I meant if the doctors could deny me treatment. I am healthy in every other way, no history of depression, thyroid etc. I'm just afraid that if my biopsy would come back 0. I got a viral load of 580 10E3, I think that reads 580.000, if I'm correct. Could have contracted hep c any time between 78 and 98. Don't have my genotype, yet. Should get it in a week.
Good luck to all of you, too. We all need it
Good luck to all of you, too. We all need it
Its my understanding that US health insurance companies are looking for a certain stage and grade of liver damage from Hep C before they will consent to pay for treatment. My doctors explained that I would have no problem getting approval because the biopsy showed advancing damage, but that insurance will not automatically pay for tx simply because there is a diagnosis of Hep C. Its a very costly course of treatment and they will deny coverage for it if they can.
If you are talking about being denied treatment by the insurance company, I don't think they concern themselves with the amount of damage you have. If you are talking about physicians denying you a prescription, I guess that could happen but most docs will allow you to treat if you have any viral load at all. They may feel that you don't need treatment at that point, but I'm sure they would discuss their reasoning at that point.
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