You are being asked to consider whether or not you would accept an organ transplant organ from a hepatitis C virus infected donor. This leaflet will explain why this option is being considered for you, and will explain the potential benefits and the potential risks that this may involve. It is important to emphasise that it is your choice whether or not you agree to accept a transplanted organ from a hepatitis C virus infected donor.
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 30 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 over 95% of patients who are infected with the hepatitis C virus. Treatment requires taking tablets for 12 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 organ transplant?
There are not enough donated organs in the UK to transplant into all people who may need them. Sadly this means that many people die on the waiting list. This is especially true for those people who are difficult to transplant because they have a rare blood group or tissue type, or if they have a lot of antibodies in their blood against other people’s tissue types. These people often wait a long time for a transplant and are more likely to die on the waiting list.
Doctors are therefore trying to find ways to increase the number of organs that can safely be transplanted. 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 advantages to me of receiving a hepatitis C infected organ transplant?
If you agree to accept an organ transplant from a hepatitis C virus infected donor, you may receive a transplant more quickly. This may be very helpful if you would otherwise wait a very long time for a transplant. Also, because organ donors who are infected with hepatitis C virus are younger than average, and less likely to have other important health issues, their organs may be of higher quality and therefore more likely to work immediately and may last longer.
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 will become infected with the virus yourself. If hepatitis C virus infection is not treated you may become jaundiced (yellow) and may develop severe inflammation in the liver (fulminant cholestatic hepatitis). In the longer term (three to six months) hepatitis C may result in kidney injury. However, you will be offered treatment to cure you of the hepatitis C virus as soon as is has been confirmed that you have been infected. This will minimise the risk of any damage to you.
Another important risk to consider is the very small chance that the hepatitis C virus may not disappear after the 12 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 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.
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 transplantation.
What is the experience of 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 kidneys from hepatitis C virus infected donors into patients who are not infected with hepatitis C virus. These have mainly taken place in the United States and have required that patients receive treatment for hepatitis C very early (within four weeks) after transplantation. These studies show that it is possible to cure every patient of hepatitis C virus after kidney transplantation (100% cure rate). Importantly, the kidneys then went on to work very well, and the overall outcomes were the same for the patients who received kidneys from hepatitis C virus infected donors as those for patients who received kidneys from hepatitis C virus negative donors.
How do I know that the hepatitis C infected organ transplant has not been damaged by the virus?
Hepatitis C can cause liver damage, and, in rare cases, kidney damage too. 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. Only livers with very little or no damage from hepatitis C virus infection are used for transplantation, and the same precautions will apply to hepatitis C virus infected livers that are transplanted into patients who are not infected with the hepatitis C virus.
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 pre-existing damage are used for transplantation. The same precautions will apply to kidneys from hepatitis C virus infected donors.
Hepatitis C virus does not damage the heart, lungs or pancreas, so these organs should work just as well from a hepatitis C infected donor as from a hepatitis C negative donor.
What are the 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 or saliva. The virus can be transmitted through sexual intercourse, although it is rare, so we recommend that you or your partner uses 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. The first blood sample will be taken within the first seven days of your transplant, then again within the first 14 days and the last sample will be taken within the first six weeks of your transplant. If the virus tests remain negative by that time, then your transplant organ has not passed on the infection to you. If any of these tests are positive for hepatitis C virus, then the doctors looking after you will start you on highly effective treatment within 3-10 days of the result. This means that you will be prescribed some specific antiviral tablets that you will need to take for a total of three months. This will consist of either one extra tablet or three extra tablets a day. The exact number will depend on which treatment the doctors think is best suited to you. During treatment you will have regular blood tests 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 12 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 12 week course of treatment using a different combination of tablets will be used. This 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 in recent world experience and are generally very well tolerated by patients taking them.
What happens to me if I refuse 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 as now 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 for compensation after catching hepatitis C stipulate that you are entitled only if you have unwittingly been infected during the course of medical treatment. 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 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 – you can reach them on 0845 223 4424 or 020 79089 6221 and by email: firstname.lastname@example.org
There is also a lot of useful up-to-date general information on their website.
The British Liver Trust provides excellent information on hepatitis C
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Cambridge University Hospitals
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