You are being asked to consider whether or not you would accept a kidney transplant from a Hepatitis C virus infected donor. This information will help you to decide whether or not you would accept a kidney transplant from a donor who has had Hepatitis C.
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. 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 kidney transplant?
There are not enough donated organs in the UK to transplant into all people who may need them. 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 kidney 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 you.
If Hepatitis C virus infection is not treated you may become jaundiced (yellow) and may develop inflammation in the liver (A small number of transplant recipients can develop a severe inflammation called Fulminant Cholestatic Hepatitis). In the longer term (3-6 months) Hepatitis C may rarely result in kidney injury but you will have been treated very soon after your transplant.
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 a kidney 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 kidney from the Hepatitis C infected donor has not been damaged by the virus?
Kidney Transplants
Hepatitis C can, in rare cases, cause kidney damage. The health of kidneys that are offered for transplantation is carefully assessed by a series of blood and urine tests that are carried out on the donor before and after they die.
Only kidneys with very little or no known pre-existing damage are used for transplantation. The same precautions will apply to kidneys from Hepatitis C virus infected donors.
Are there any risks to my family if I receive a Hepatitis C Infected kidney 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 kidney 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.
- This means that you will be prescribed some specific antiviral tablets that you will need to take for a total of twelve weeks. This will consist of either one extra tablet or three extra tablets a day. The exact number will depend on what treatment the doctors think is best suited to you.
- During treatment you will have regular appointments and blood tests in Leeds at St James’s University Hospital, to make sure that the treatment is working and that the virus is disappearing from 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.
- It is worth mentioning that these new drugs for Hepatitis C have very few side effects and have now been given to millions of people across the world and are generally very well tolerated by patients taking them.
What happens to me if I decide not to accept a Hepatitis C infected kidney transplant?
It is your choice whether you choose to receive a kidney transplant from a Hepatitis C virus infected donor. If you prefer not to accept a kidney from such a donor you will remain on the transplant waiting list and you will continue to wait for a suitably matched kidney.
Will I be entitled to compensation if I accept a Hepatitis C infected kidney 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 kidney transplant.
Where can I find out more information?
Contact
Please speak first to your transplant doctor or contact the renal transplant coordinator’s.
Further information
If you have any further questions about the information contained.
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. There is also a lot of useful up-to-date general information on their website.
