Hepatitis C in Thalassemia: Q&A with Dr. Richard Ward
July 28, 2014 – The outlook for individuals living with thalassemia is better than it ever has been thanks to more choices for effective chelation. However, this brings with it medical concerns that patients previously did not face. One example of this is hepatitis C infection and the risks associated with it: liver cirrhosis (scarring) and liver cancer. Some European countries are now reporting this is the greatest threat to the health of their patients, even more so than iron overload. This Q&A session with Dr. Richard Ward focuses on what you should know and what questions you may want to ask when discussing hepatitis C with your provider, or if referred to a liver specialist (hepatologist).
Why is it important for me, as an individual with thalassemia, to know about hepatitis C?
Globally, it was estimated that in 2005, more than 185 million people had hepatitis C virus (HCV) infection. It is estimated that anywhere between 5% and 85% of patients with thalassemia have evidence of Hepatitis C infection. The prevalence varies a lot by country. In the U.S., the risk is mainly from receiving blood transfusions prior to July 1992, and patients who acquire HCV through blood transfusion may be at increased risk for more severe or rapid disease progression compared with those infected through other means. In addition, High NTBI (non-transferrin bound iron), the toxic part of iron, is damaging to the liver.
Infection with the hepatitis C virus (HCV) can result in both acute and chronic hepatitis. The acute process is usually asymptomatic; any symptoms abate within a few weeks. 60-80% of cases develop chronic hepatitis (abnormal liver enzymes). Chronic HCV infection is usually slowly progressive, with 20-30% of chronically infected individuals developing cirrhosis over the following 20-30 years. Chronic HCV is the most frequent indication for liver transplantation in the U.S.
What are the challenges involved in treating hep C in a person with thalassemia? Why can’t they just use the standard treatments for hep C?
Up to very recently the current standard treatment for hepatitis C was a combination of 2 drugs, ribavarin and interferon (IFN) for 6 to 12 months. These both have significant side effects for all. In addition, ribavarin causes an hemolytic anemia that can lead to a dramatic increase (40%) in blood transfusion requirements. It can also cause some kidney problems which requires close monitoring if using deferasirox/Exjade as well. IFN can cause low blood counts too (may be especially carefully if chelating with deferiprone/Ferrirprox) and affect the thyroid gland and blood sugars, common hormonal issues in individuals with longstanding thalassemia. This has dissuaded many patients and providers from treatment if not urgently required. However, there is some research to suggest that it is easier to chelate the iron when the hepatitis virus is under control, and that liver iron may not actually increase as much as we feared during treatment. Newer drugs bring with them the possibility of minimal side effects and in particular, little effect on the hemoglobin level.
What is the best treatment for a person with hepatitis C?
This is actually a complex question and not straightforward to answer. It depends partly on the specific type of hepatitis C virus you have, the amount of damage it has caused to your liver, and any other medical problems you may have. However, in the near future, the newer drugs will likely be so well tolerated that everyone with HCV infection will benefit from immediate treatment. 20-45% of patients will spontaneously clear the virus from the body and not require any treatment at all. The goals of treatment are to: eradicate the virus, reduce inflammation in the liver, and prevent cirrhosis. The aim of treatment is to achieve a “sustained virologic response” (SVR) which suggests you will successfully eradicate the virus from the body.
In addition to medications there are lifestyle modifications that can be beneficial: lose weight, stop smoking (including marijuana) and abstain from alcohol. All of these can otherwise accelerate liver injury. There is no need to avoid acetaminophen/Tylenol, but do not exceed a dose of 2 grams a day.
There is no vaccination we can provide to protect you against contracting HCV, so avoidance of infection is key. The main method of contracting hepatitis C is through infected blood transfusions. Fortunately this is now incredibly rare in the U.S. and most other developed countries. Testing was introduced for donated blood in 1992 and improved in 1999, making it incredibly unlikely, less than 1 in 1-2 million chance. Donated blood undergoes rigorous testing, and even before then the blood donor is screened to ensure they are low risk for being infected. The Centers for Disease Control (CDC) is the federal body responsible for monitoring (http://www.cdc.gov/hepatitis/C/index.htm). The risks can be higher in other countries, particularly in the developing world, and you should try to avoid transfusion whilst travelling. Of course, you can also get HCV in the same way as everyone: injecting recreational drugs or snorting cocaine. The chances of passing HCV onto your baby is <2% and generally only if you have active virus present in the blood during pregnancy. We do not advise for any specific delivery plan and there is no problem with breast feeding. The risk of transmitting the virus to your partner is also very low, less than 0.5% a year.
Are there any new treatments for hepatitis C coming up?
There are many new drugs (Direct Acting Antivirals, DAAs) being developed for treating hepatitis C with studies regularly published in the medical journals this past year. At the present time they are often used in combination with the older drugs, and so are not ideal for patients with thalassemia. However, research is being carried out using combinations of only the new drugs and the hope is they will not only be successful at eradicating the virus but also very well tolerated. www.clinicaltrials.gov or www.researchmatch.org is a great place to look for what research is currently being performed. Research is also looking at vaccines and new forms of interferon.
What else would you like to tell people with thalassemia about hepatitis C?
Any additional harm to your liver in addition to HCV infection increases the risk of liver damage. This includes alcohol, other viruses such as hepatitis B, and high liver iron levels. You should be vaccinated against hepatitis B and reduce iron overload in the liver through good chelation. If you unfortunately have developed cirrhosis you will require ongoing monitoring because the risk of liver cancer remains, regardless of whether you have had successful treatment for the virus.
As always, knowledge is empowerment to help you take best care of your health and thalassemia. Make sure you know your hepatitis C status, and if infected, start a discussion with your provider about assessing the damage it’s done to your liver and options for treatment. There has been a lot of new developments in hepatitis C care in recent years and if you have not seen a specialist recently, now’s a good time to book a follow-up appointment with them.
As well as the resources listed above, others include the Cooley’s Anemia Foundation and: