You are being asked to consider whether or not you would accept an organ transplant from a Hepatitis C virus infected donor.
The information in this leaflet will help you decide whether or not you would accept an organ transplant from a donor who has active Hepatitis C infection.
What is Hepatitis C?
Hepatitis C is a virus that is transmitted in infected blood and body fluids. It lives in the liver and blood of infected individuals and can cause inflammation and scarring of the liver. The scarring can be severe, although on average it takes twenty to thirty years for the scarring to become life- threatening in non-transplant patients. Severe scarring may
develop more rapidly in transplant patients taking drugs that suppress the immune system.
Treatments for Hepatitis C have changed greatly over recent years. It is now possible to cure nearly all patients who are infected with the Hepatitis C virus.
Treatment requires taking tablets for twelve weeks. These are well tolerated with minimal side effects. Once the virus is cleared it does not come back and does not affect your long term health.
Why am I being offered a Hepatitis C infected organ transplant?
There are not enough donated organs in the UK to transplant all people who are waiting for a transplant. Due to recent breakthroughs in Hepatitis C virus treatment it is now possible to consider using organs from donors infected with Hepatitis C virus for transplantation. These donors are generally younger than average and may be healthier, with lower blood pressure and less heart disease and other medical conditions. Hence their donated organs may be of higher quality than average.
What are the risks to me if I receive a Hepatitis C infected organ transplant?
The main risk of accepting an organ transplant from a Hepatitis C virus infected donor is that you become infected with the virus yourself. This will almost certainly happen if the donor has circulating virus at the time of the transplant.
You will however be offered treatment to cure you of the Hepatitis C virus as soon as it has been confirmed that you have been infected. This will minimise the risk of any damage to your new liver.
If Hepatitis C virus infection is not treated you may become jaundiced (yellow) and may develop inflammation in the transplanted liver. (A small number of transplant recipients can develop a severe inflammation called Fulminant Cholestatic Hepatitis). In the longer term (3-6 months).
There is a very small chance that you may not be cured of the Hepatitis C virus after the twelve weeks of treatment (see below). The chances of this happening are less than 2 in 100 (2%). If this were to happen, you would be offered a different course of tablets for a further 12 weeks that has been shown to be highly effective in curing patients whose treatment has failed with other drugs.
These drugs achieve 96 to 98% cure rates. This means that it is very unlikely (1 chance in 2,500) that the transplant team will not be able to cure you of the virus if you are infected. Please discuss with your transplant doctor if you have any further questions regarding this small chance that you would not be cured by treatment with these tablets.
Whilst all Donors
Are routinely screened for the presence of other infections like HIV or Hepatitis B in addition to Hepatitis C, the screening tests can very rarely miss infections and there remains a very small possibility that these or other infections could also be transmitted at the time of transplant.
What has happened to other patients who have been infected with Hepatitis C at the time of an organ transplant?
There have already been several studies looking at the results of transplanting organs from Hepatitis C virus infected donors into patients who are not infected with Hepatitis C. These have mainly taken place in the United States but some UK patients have already been transplanted with Hepatitis C positive donors.
Patients have received treatment for Hepatitis C within four weeks of the transplant. In these studies every recipient was cured of Hepatitis C. Importantly, the transplanted organs then went on to work very well, and the overall outcomes were the same for the patients who received organs from Hepatitis C virus infected donors as those for patients who received organs from Hepatitis C virus negative donors.
How do I know that the organ from the Hepatitis C infected donor has not been damaged by the virus?
Liver Transplants
In the UK, livers from hepatitis C virus infected donors have been used safely for more than 10 years to transplant into patients who already have liver damage caused by hepatitis C virus infection. The livers of donors who are Hepatitis C positive are carefully inspected by the team retrieving the organ. If they are concerned that there may be significant damage to the liver then a biopsy is performed of the donor liver and if there is significant fibrosis (scarring) then the liver will not be used.
Are there any risks to my family if I receive a Hepatitis C Infected organ transplant?
The risks to your family are very small. Transmission of the virus is mainly through infected blood and body fluids. Until you are cured of Hepatitis C virus, which should happen within the first three to four months after the transplant, we recommend that you do not share your toothbrush and razor blades with anyone. The virus is not transmitted through kissing and saliva.
The virus can be transmitted through sexual intercourse, although it is rare, so we recommend that you use barrier contraception (condoms) until you are told that you have been cured of the virus.
How will I be treated if I receive a Hepatitis C infected organ transplant?
After your transplant you will have a specific and very sensitive blood test to look for the presence of Hepatitis C virus in your blood (a PCR test). The first blood sample will be taken within the first seven days of your transplant, then again within the first fourteen days and the last sample will be taken within the first six weeks of your transplant. If all the virus tests are negative then your transplant organ has not passed on the infection to you. If any of these tests are positive for the Hepatitis C virus then the doctors looking after you will start you on highly effective treatment very soon after we receive the result.
During treatment you will have regular blood tests to make sure that the treatment is working and that the virus level is dropping in your blood. Once the treatment is finished you will have further blood tests to check that you have been cured of the virus. If the virus disappears from your blood and cannot be detected twelve weeks after the treatment has stopped then you have been cured. We predict that more than 95% of patients will be cured.
If the first course of treatment does not work then a second twelve week course of treatment, using a different combination of tablets, will be used which cures more than 95% of patients whose first course of treatment has not worked.
What happens to me if I decide not to accept a Hepatitis C infected organ transplant?
It is your choice whether you choose to receive an organ transplant from a Hepatitis C virus infected donor. If you prefer not to accept an organ from such a donor you will remain on the transplant waiting list and you will continue to wait for a suitably matched organ.
Will I be entitled to compensation if I accept a Hepatitis C infected organ transplant?
No, you will not be entitled to compensation as the current rules stipulate that you are entitled only if you have unwittingly been infected. This would not be the case if you knowingly accept a Hepatitis C infected organ transplant.
Where can I find out more information?
Please speak first to your transplant doctor if you have any questions about the information contained in this leaflet.
Other sources of information are also available:
The Hepatitis C Trust
The Hepatitis C Trust is the national charity for people affected by Hepatitis C and is patient-led. Staff on their confidential National Helpline will be able to answer any questions you may have about hepatitis C and provide support and reassurance about the new treatments available.
Contacts Us
The Liver Transplant Coordinators
Office hours Monday to Friday.