Re: Medical Provider Info and Drug Costs

[Guest guest]

Dear All:

I do not know how many providers out there know that they have some

excellent assets for info on HCV and different responses to the combo

treatment. For those on the Rebetrol, your provider can call Shering and

they will offer a list of some of the more experienced and knowledgeable

providers to consult with. These are people whose primary practice is

composed of HCV patients. Some did some of the studies for Rebetrol, and

others are doing current research, (probably for the same drug company).

All your provider needs to do is to call the Shering " hot line " and

they will give them names, phone numbers and similar info on who to

contact. I have used this source and found some excellent, real time

information from these people. They have a great deal of the experiences

that many providers do not have, and they can assist when someone does

not follow the " cook book " approach. Basically, they have been there and

done that. If your provider is not aware, or really experienced with

HCV, and the side effects of some of the meds, if they are willing, this

is an excellent source of info, and I have found these specialists ready

and willing to listen and help.

I do not know if there is the same info, or resources available for

the patient. Since I am an advocate of the patient, when someone poses a

question, or has a problem that I am not really sure about, I place the

call myself. I never have had a patient call, so I can not say. To me,

if your provider does not really have an answer, or is not sure, they

should seek other, more experienced resources, or not treat HCV. I

realize some of these are " ego " related, but tough it is your life and

egos should not play a part in your care.

If your provider will not take the time to treat you properly,

switch to someone who will. Granted some patients have limited choice of

providers, but, whether it be an HMO, or similar organization, you are

still owed the best care possible and if your provider is not the one

who will do everything possible to learn and help you, then you need

someone who will. If necessary, and it is an HMO situation, make a

formal complaint to the State Insurance Commissioner's Office, go to the

media, and/or do anything and everything possible to get at least

someone who can treat you componently.

Maybe you are receiving the best care available today, but, assuming

you are not asking for something unrealistic, you are owed answers, or

at least someone who will say I do not know and let me find out. If you

do not advocate for yourself, probably noone else will care to do the

same. Listening to people on this list, it is scary how many victims are

being given half assed, wrong, or non-informed, care. It amazes me to

read some of these stories and it is scary how many are not being

treated as people, or by someone who cares, versus just going through

the motions.

I will also say that there are patients that never ask their

provider, and then bitch because they have many unanswered questions.

Patients owe themselves and their provider complete communication. If

you don't ask, while your provider should do the teaching, you are

responsible for not getting answers, and a patient has no reason to

bitch if they leave with many uncertainties. It does not make a

difference if your provider is with an HMO, or for any other reason,

when they are with you, you should be made to felt as if they have all

the time in the world to listen and talk. If you do not feel that way,

(whether your provider spends 10 minutes or an hour), you need to find

someone who will make you feel this way. At least in my opinion and in

my practices.

In reference to the medications, if they are approved therapies,

EVERY drug company has assistance programs. This includes Sherring and

the combo. You need to explore these avenues if money/costs, become a

problem. Another way for those on " non-approved " therapies, many of us

will help when we can. A few months ago, someone on a different list

serve was being treated with a different type of interferon, and, if

they were responsive, then the ribaviran would be added. Their insurance

company said they would not pay for the ribaviran since this treatment

was considered " experimental " . She put out a call, and I had been saving

alot of ribabviran my wife could not use, and I mailed it off to her.

JUst another way to get the deserved and owed help for everyone.

Hope this helps some. Marty

[Guest guest]

Dear All:

I do not know how many providers out there know that they have some

excellent assets for info on HCV and different responses to the combo

treatment. For those on the Rebetrol, your provider can call Shering and

they will offer a list of some of the more experienced and knowledgeable

providers to consult with. These are people whose primary practice is

composed of HCV patients. Some did some of the studies for Rebetrol, and

others are doing current research, (probably for the same drug company).

All your provider needs to do is to call the Shering " hot line " and

they will give them names, phone numbers and similar info on who to

contact. I have used this source and found some excellent, real time

information from these people. They have a great deal of the experiences

that many providers do not have, and they can assist when someone does

not follow the " cook book " approach. Basically, they have been there and

done that. If your provider is not aware, or really experienced with

HCV, and the side effects of some of the meds, if they are willing, this

is an excellent source of info, and I have found these specialists ready

and willing to listen and help.

I do not know if there is the same info, or resources available for

the patient. Since I am an advocate of the patient, when someone poses a

question, or has a problem that I am not really sure about, I place the

call myself. I never have had a patient call, so I can not say. To me,

if your provider does not really have an answer, or is not sure, they

should seek other, more experienced resources, or not treat HCV. I

realize some of these are " ego " related, but tough it is your life and

egos should not play a part in your care.

If your provider will not take the time to treat you properly,

switch to someone who will. Granted some patients have limited choice of

providers, but, whether it be an HMO, or similar organization, you are

still owed the best care possible and if your provider is not the one

who will do everything possible to learn and help you, then you need

someone who will. If necessary, and it is an HMO situation, make a

formal complaint to the State Insurance Commissioner's Office, go to the

media, and/or do anything and everything possible to get at least

someone who can treat you componently.

Maybe you are receiving the best care available today, but, assuming

you are not asking for something unrealistic, you are owed answers, or

at least someone who will say I do not know and let me find out. If you

do not advocate for yourself, probably noone else will care to do the

same. Listening to people on this list, it is scary how many victims are

being given half assed, wrong, or non-informed, care. It amazes me to

read some of these stories and it is scary how many are not being

treated as people, or by someone who cares, versus just going through

the motions.

I will also say that there are patients that never ask their

provider, and then bitch because they have many unanswered questions.

Patients owe themselves and their provider complete communication. If

you don't ask, while your provider should do the teaching, you are

responsible for not getting answers, and a patient has no reason to

bitch if they leave with many uncertainties. It does not make a

difference if your provider is with an HMO, or for any other reason,

when they are with you, you should be made to felt as if they have all

the time in the world to listen and talk. If you do not feel that way,

(whether your provider spends 10 minutes or an hour), you need to find

someone who will make you feel this way. At least in my opinion and in

my practices.

In reference to the medications, if they are approved therapies,

EVERY drug company has assistance programs. This includes Sherring and

the combo. You need to explore these avenues if money/costs, become a

problem. Another way for those on " non-approved " therapies, many of us

will help when we can. A few months ago, someone on a different list

serve was being treated with a different type of interferon, and, if

they were responsive, then the ribaviran would be added. Their insurance

company said they would not pay for the ribaviran since this treatment

was considered " experimental " . She put out a call, and I had been saving

alot of ribabviran my wife could not use, and I mailed it off to her.

JUst another way to get the deserved and owed help for everyone.

Hope this helps some. Marty