Hepatitis C Survivor  

M​ore Ignorance And This Time It's From An Entire Country

Written By:  Teri Gottlieb

Most all of us, at some time or another, have had thoughts about what would happen after we die. When you get a diagnosis of hepatitis C those death thoughts kind of smack you in the face. Some people have life insurance policies and have even made funeral arrangements or at least spoke with family members about what their last wishes would be. The average person would want things to go as smoothly as possible so their family and friends could move thru the grieving process under the best of circumstances.

I'm pretty sure we could all get an image in our heads right now if we had to about what our funeral would be like and I want you to do just that for a second. Stay with me, I'm going somewhere with this. In that second that you thought about a funeral did you think of a body bag? How about one with a big black and yellow logo on it that said "BIOHAZARDOUS"? Was that in your image? If you live in the UK, it better be, because that's what is going to happen.

The following comes from the UK, from a well known Hepatitis C website called Hep C Trust. This is NOT their own commentary, they did not make this up. This is what happens if you die in the UK when you have or have had HCV or HBV or HIV or any other infectious disease. The entire article can be found on their website but for the sake of this blog, I'm going to give you parts of it. Are you ready for this? Here we go...

"Special arrangements by undertakers in dealing with infectious diseases: Irrespective of our state of health in life, all of us with hepatitis C (including those who have had successful treatment) will be treated with extreme caution by those who take care of us in death if our hepatitis C status is known to mortuary or undertaker staff. This is a general health and safety policy with regard to all infectious diseases (for example vCJD, HIV, HBV)."

This little gem is in the beginning of the article.  How BACKWARDS is the UK in that even if you are cured from HCV you are a leper in death?  That first disease listed in the parenthesis, vCJD, that's Mad Cow Disease. So now Hepatitis C, HIV and Hepatitis B are in the same category as Mad Cow Disease. There is a little gem in these sentences, "if our hepatitis C status is known to mortuary or undertaker staff" meaning, if they don't know, you don't get treated like this.  Wait, this gets WORSE.

"The Health Protection Agency advises that when someone has died who is known to have had an infectious disease like hepatitis C, they are to place the body in a bag which may then be labelled with yellow and black “Biohazard” tape and/or with tags stating “Infectious Disease” or “Danger of Infection”. This is to ensure that care is taken when transporting the body and to warn anyone responsible for handling it to exercise caution."

There is that body bag I was talking about. Now at first read you would think this was just for transporting uses right? Nope. Keep reading.

"Issues for your family to be aware of: It is unlikely that an undertaker will agree to embalm or prepare a body that is known to have hepatitis C. Certainly they are advised not to by the Health Protection Agency. Aside from preserving or enhancing the look of the body, this rule also extends to dressing the body in particular clothes, applying make-up, combing hair etc. Basic hygienic preparation of the body is however considered safe by the HPA. Relatives and friends should still be able to view the body even without embalming but this means that anyone wishing to view must do so soon after death. It is important to be aware that the body will remain in the sealed bag even when it is placed into a coffin and therefore relatives/friends may well have to take responsibility to open the bag themselves if they want to view it or if they want to prepare the body themselves (washing, clothing, combing hair, putting on makeup etc)."

The above excerpt breaks my heart. This whole thing was brought to my attention by a friend of mine who lives in the UK. We were having a conversation on Facebook one night and she brought up the body bag thing. She assumed this was the way it was everywhere. One quick phone call to a local funeral home here in the Chicago area confirmed that it was not. Here in the U.S., none of this is necessary. The body is embalmed and that takes care of the virus. I cannot believe that the UK is so behind the times. Basically, all the funeral home will do is wash the body. They will not do anything else.

Now I want you to think for a minute about what your family would feel like if they were surprised by this turn of events at a time so horrific and raw. Emotions are already high and now insult is added to injury. Truthfully, I can't even begin to imagine, Here is another thing. Recently this subject came up on one of the hepatitis C groups. There were people in the conversation from the UK and they had no idea that this was the case. Can you imagine not knowing this in life and your family getting hit with this upon your death? This is not common knowledge out there. I feel the need to inform people of these horrific practices..

So I want to know.  After reading this, are you as outraged as I am? If none of this is necessary in the U.S. because embalming does, in fact, kill any traces of the hepatitis c virus, why are the people in the UK put thru this kind of humiliation when a loved one passes away with hepatitis C? Has anyone got an answer for that one? If you do, please enlighten me. In the meantime, I want to see what can be done to stop these barbaric practices. What has to happen in the UK so that people with HCV can be allowed to die with some dignity? It's very sad.